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citrineghost · 3 years

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Talking about disabled people

Why do abled people have literally no idea how to talk about disabled or chronically ill people? I don’t know but let me go over this for those of you who are abled and don’t understand

(For anyone using screen readers, the “abled person” lines have a red x next to them to indicate they’re not okay and the “disabled person” lines have a green check to indicate that they are okay)

(Also TW for ableism for all of the examples of what you shouldn’t be doing as well as fatphobia and body image for the section on stigmatizing appearance.)

Do not turn disabled people into inspiration porn.

Here’s the nuance:

❌ Abled person: It’s so amazing that this disabled person has managed to get a job and get married even though they’re disabled and it must be really hard for them and all of the people around them

Why: You, as an abled person, are implying that it’s a miracle that a disabled person can have a happy life without being “normal”

✅ Disabled person: Seeing this other disabled person with a full time job and a love life makes me feel encouraged that I can be happy too despite my disabilities

Why: Disabled people often feel hopeless with their own disabilities because of the unhealthy perspective the abled world pushes regarding how disabled people must be miserable.

Do not mourn disabilities.

Here’s the nuance:

❌ Abled person: This Youtuber I watch just came out about their disability. It’s just really sad. I can’t believe they’ve been dealing with this all without talking about it. They acted so happy all the time!

Why: Being disabled is not sad. We struggle with accessibility in a world that likes to marginalize us and that is the only sad thing about being disabled. Implying that it is sad that someone is disabled is to imply that you don’t believe they can achieve happiness or comfort because of it. The second part of this statement is problematic because it implies that disabled people can’t be happy or that because someone is presenting as happy that it must be a farce because disabled people are sad and miserable all the time, which is completely untrue.

✅ Disabled person: I just found out I have a lifelong disability and I’ve been having breakdowns about it for the last week because I’m afraid of what this means for me.

Why: Disabled people are allowed to mourn themselves and the struggles they face - because there are struggles to disability. However, this is different than when an abled person does so for many reasons, two of which I will cover.

The first reason is that disabled people are aware of the facets of their lives that may change. Someone with a degenerative disease may have to give up hiking or someone with a joint disorder may have to limit their knitting or drawing to save themselves from severe joint pain and inflammation. When abled people mourn disabilities, they are typically mourning perceived losses, which include things like romance, careers, and happiness, which are all things disabled people are perfectly capable of achieving. If you are friends with someone disabled, the only time you should be mourning their disability is if you are directing sympathy as a specific facet of it which they have brought up themselves before and which they have implied is acceptable to give sympathy for. This is something you’ll have to feel out with individuals because everyone is comfortable with different levels of sympathy and understanding about disability subject which may be touchy.

The second reason is that a large reason disabled people struggle on a day to day basis is due to inaccessibility and ableism that is only there due to an ableist society. For instance, a disabled person might find out they’re going blind and realize they will now have to learn to navigate a world where they can’t read signs without braille on them. They might find out they have become paralyzed from the waist down and will now have to use a wheelchair every time they’re out of the house, in a world where ramps and elevators are touch and go and where some places put illegal lock-and-key restrictions on elevators which can be dangerous for wheelchair users and physically disabled non-wheelchair users alike. As a disabled person, a large part of what looks like mourning disability is actually mourning their future of struggling with ableism. As an abled person, you don’t have any reason to mourn that. Instead, it is your job to fight for accessibility in any place you have influence.

Do not apply suffering to disabilities.

Here’s the nuance:

❌ Abled person: I just found out my friend is suffering from autism.

❌ Abled person: Oh! I didn’t realize you were struggling with EDS.

❌ Abled person: Apparently my classmate has been fighting with chronic pain this whole time.

❌ Abled person: I talked with this guy who was confined to a wheelchair the other day.

Why: Disabilities do not inherently come with suffering. While many people do suffer from certain elements of their disabilities, it is not your place, as an abled person, to decide if that is the case for them. Saying that someone is suffering from whatever their disability is reinforces the idea that disabled people are weak, sickly, and miserable, which leads to other ideas like that our lives are inherently less valuable than abled people’s because all we do is sit around uselessly while we suffer.

In regard to the wheelchair example, specifically, this is a common issue. Abled people frequently refer to wheelchair users as being “confined” or some other equivalent. This is because abled people see a wheelchair as something that ruins mobility. They are comparing their own ability to walk on two legs all the time with no repercussions to what their life would be like if “confined” to a wheelchair. However, for those using wheelchairs, a wheelchair is actually improving their mobility. If someone is paralyzed, their use of a wheelchair makes it possible for them to leave bed and move around independently and leave the house when they otherwise might be unable to. For someone who has chronic fatigue or a heart condition or so on, using a wheelchair part time can make it possible to go out for long periods of time when they otherwise might not be able to stand for more than a few minutes without feeling faint or dizzy. Wheelchairs improve the lives of wheelchair users. If they were being “confined,” they wouldn’t be using them.

✅ Disabled person: I’m just really struggling with my EDS lately. I’ve been so inspired to draw, but my hands just won’t cooperate with me lately from the cold weather.

Why: Disabled people do struggle with some things regarding their disabilities. It is only natural that they will talk about these struggles when they are with someone they’re comfortable doing so around. This is usually a pinpointed struggle and not a blanket statement. Even if a disabled person makes a generalized statement about hating having a disability, it is well within their right to make that statement, while it is completely inappropriate for an abled person to make that comment for them.

Do not gatekeep or polarize the disabled experience.

Here’s the nuance:

❌ Abled person: Our friend says she’s depressed, but I’m pretty sure she’s just saying it for attention. She seems fine whenever I see her.

Why: Mental illness is not the same for everyone. While one person with depression may be unable to drag themselves out of bed to get food, another person with depression might put on a full face of makeup and plaster on a smile every morning only to go home and collapse in bed at 4pm. They may feel completely empty the entire time they seem to be having fun. Or, if you can believe it, they might just be having fun. Depression is not “sad all the time” disorder. It’s deeper than that. If you can’t see evidence of the disorder someone has and you’re not A) their therapist or B) their doctor, mind your own business.

❌ Abled person: My classmate uses a wheelchair but I see him standing up out of it all the time. I don’t know who he’s trying to fool. He’s not sneaky.

Why: Wheelchair users do not always use a wheelchair because they are paralyzed or unable to stand or walk. Many people use wheelchairs because of physical weakness caused by disability, such as muscle atrophy, joint instability, or chronic pain that is worsened by walking or standing for more than short periods of time. There are also heart conditions such as POTS that make the heart rate go up by over 30 BPM by just standing, making the person suddenly feel lightheaded, risk passing out, or just plain exhausting them. Why a person uses a wheelchair is none of your business and it is not always as cut and dry as being completely unable to move without one. People who do not need wheelchairs do not use wheelchairs.

Do not stigmatize disability and physical appearance.

Here’s the nuance:

❌ Abled person: It’s no wonder her joints hurt. It’s not a disorder, she just needs to lose weight.

Why: It is a common misconception that people struggle physically because of their weight. While this may be true in some cases, for those with disabilities, it is not. Abled people tend to get stuck thinking in the same direction. They think that weight is causing disabilities. In fact, it frequently goes the other direction. Disabilities often lead to weight gain. This can be caused by hormonal imbalances, muscle atrophy, and the inability to be as physically active as abled people. While people moralizing weight and being fatphobic is an issue in and on itself, it is especially dangerous and ableist when it leads to people’s disabilities being ignored, excused, or overlooked due to the way they look. This is a problem within the medical community especially, as doctor’s frequently won’t diagnose a disability unless their patient loses weight first to prove that the problem persists even when weighing less.

❌ Abled person: I would be depressed too if I was overweight and looked like her.

❌ Abled person: How can she be depressed? She’s gorgeous and has it all. How ungrateful can you be?

Why: Depression, as well as any other mental illness, is not cause or fixed by physical appearance. It is caused by trauma, pervading negative circumstance, or by an independent chemical imbalance in the brain that has not been caused by any environmental factors. Someone being attractive to someone else will not cure their depression. Their depression likely warps their sense of self worth anyway, so their appearance is irrelevant. A person being overweight or unattractive by your standards is not causing them depression unless they are being traumatized by fatphobia, to a degree that it is destroying their mental health. That’s not a problem with their appearance, it is a problem with fatphobes who see a person’s weight as determining their value.

❌ Abled person: She’s pretty but she’s crazy as hell.

Why: Aside from the obviously derogatory use of the word “crazy,” there is a lot wrong with this statement. The first thing is that it values a person based on her appearance and nothing else. The second thing is that it implies that her attractiveness is diminished because of a mental health issue. The third thing is that it implies her diminished attractiveness due to her mental health issue detracts from her overall value. People with mental health disorders can look like anyone else and their mental health does not take away from their value as a person.

Do not police disabled people’s self identifiers or labels.

Here’s the nuance:

❌ Abled person: You can’t call yourself a cripple, that’s an ableist slur.

Why: Disabled people can call themselves whatever they want to, actually. When someone uses a word considered a slur to self-identify, it is because they are reclaiming it. The same way Black people can call themselves the n word and white people cannot, the same way people can self identify as queer, disabled people are allowed to call themselves crippled, crazy, or any other previously condemned slur that they want to. Reclaiming slurs is a way to take away the power they have over people by those who wish to use them in a derogatory way.

❌ Abled person: No, we can’t go to that one amusement park. It has no accessibility options and my friend is crippled.

Why: The only time it is acceptable for an abled person to call a disabled person a slur, even one used as a self-identifier, is if that person has told them they can. Do not ever call your disabled friends by slurs, reclaimed or otherwise, unless you know for sure that they are okay with it. And do not ever call someone you don’t know by a slur even if you know another disabled person who has reclaimed it.

❌ Abled person: You shouldn’t call yourself an autistic person. We’re supposed to use person-first language.

Why: Person-first language (e.g. person with autism rather than autistic person) can be useful in some respects, but it is disregarded by many. If you are unsure if you should use person-first language, ask the individual you’re speaking to or about. For many, their disorder or disability is an important part of who they are and they prefer to use it as a self-identifier (e.g. wheelchair user, autistic person, disabled person, etc.) Whether you are abled or disabled, you do not have the right to take away a person’s self-identifiers, regardless of if the most popular, politically correct form of speech is different than what they use.

With this particular form of speech (person-first language), I would also recommend refraining from correcting other abled people as well. It is not agreed-upon across the board by disabled people, so it isn’t worth pushing for unless the person you’re talking to is clearly making a habit of dehumanizing disabled people. (Though this last part is only my opinion and not a hard fact.)

❌ (red X) Disabled person: Don’t call yourself crazy. It’s a slur and I don’t like it.

Why: While it is completely fine for a disabled person to tell others not to refer to them by slurs, as they have not reclaimed them, it is inappropriate for a disabled person to tell other disabled people not to self-identify with reclaimed slurs. This kind of request takes away the other person’s agency in removing the power of that slur over themselves and attempts to insist that they should regard it as something with power. If you are disabled and are triggered by a certain slur that someone you know self-identifies with, try approaching it from a more explanatory angle.

For example: I respect your choice to reclaim that word, but it’s something I am triggered by/uncomfortable with. Could you please try to avoid using it when I’m around?

From then on, it is up to the person reclaiming the slur to decide if they are willing to compromise. If they are not willing to avoid using it around you, it is your responsibility to distance yourself from them rather than try to police their language, so long as they are not directing the slur at you to intentionally make you uncomfortable or try to police your language.

✅ Disabled person: I know that we are both mentally ill, but I am not comfortable with being called crazy like you are. Please don’t call me that.

Why: Policing someone else’s self-identifying language and asking them to respect your own self-identifying language is very different things. Every disabled person has the right to ask others not to use reclaimed slurs on them, as these words have a rocky past and many disabled people have been oppressed and traumatized with these words in their personal lives. You should always respect others’ boundaries and self-identifiers.

Thank you for taking the time to read and educate yourself on appropriate language when speaking about people with disabilities!

If you have questions, feel free to reblog or reply. If you are also disabled and disagree with any of what I said, or if you’d like to add something I missed, please let your own voice be heard as well.

I encourage you to start reply chains instead of all reblogging separately, because with long chains of additions, it’s easier for people to see all of the important additions in one place. So, check out the notes and see if there are other points you agree with and want to include in your own reblog!

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aphrodite1288 · 3 years

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Hi!

I've read somewhere that Ji could serve as a public service worker because of his numerous injuries rather than as an active soldier. Is it true? Do you have any idea if he will? Isn't longer?

Hope you're having a nice day/night 👋

Yes we talked about this last year. And explained why.

But it's okay I will repeat it for you! Coz it's been a long ass time and maybe you weren't able to find the post.

Ji had a major back injury it's called (Discal Hernia or Herniated Disc) in which he had undergone a big surgery that he wasn't able to walk or standup for two months straight ( my grandma had it and ugh she couldn't stand up for a long ass time!)

Yixing said it himself I'm his interview in China that he took care of Ji and that they both had the same problem becoz of massive training as main dancers but Yixing had a waist injury instead but he couldn't undergo the surgery coz he has hemophilia, he even said how all members took care of him especially Ksoo). It was during debut era. I think the one year gap after debut 🤔 when Exo were inactive before they dropped "Wolf" and "Growl".

Also Ji was injured two times and had undergone two surgeries for his ankle injury and HE HIMSELF said back in 2016 that the doctor told him to be careful coz if he has the same injury for the third time he would never be able to dance again, and Ksoo talked on 2016 Exordium concert dvd video interview how this affected Ji's mental health and how he and all the members were worried about Ji and that Ji is assuring them that he is okay and that he has been diligently attending rehab classes for two months to be able to join their performances sooner!

So yeah becoz he had 3 major surgeries, I think he won't serve as a normal soldier maybe as a public service soldier ( which sucks coz it's 2 years sometimes more! Rather than the normal period for normal soldiers which is 18 months, like SUHO and Baek did coz of their health issues : SUHO had a major knee surgery when he was younger that's why and Baek has hypothyroidism which is a chronic disease like diabetes and blood pressure disorders, etc...!)

In some countries like Thailand, they definitely exempt people with major surgeries and chronic health diseases from serving in military ! Like how "Ten" of NCT (who had a knee surgery coz he injured it during training or I don't know I don't remember i forgot) and many other thai celebrities if I remember well Also Got7's BamBam (??) Were Exempted from serving!

But I don't know, maybe things and policies of military may change in the future 🤷🏻‍♀️

In case you want pictures and videos of these info above do tell me I'll look for them and send it to you.

#Kai Military Service #kaisoo #kadi #dika

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scnteria · 3 years

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( alex wolff, cis male, he/him, muse b ) oh snap! is that THEODORE “TEDDY” WELLS ? they work over at high volume where some of the other employees have labeled them as THE MISCREANT. that’s probably because they can be a bit ( affable ) but also pretty ( misguided ). they’re 22 and they’ve been living in woodstock for FOUR YEARS. it must be their shift because i totally hear RADIOHEAD blasting from the record store.

( @volumeupdates )

hi everyone !! phew i’m so hype to be here... hello... you can call me wren ! i’m in the est timezone and use she/her pronouns. a lil bit about me: i love making playlists and my silly little lattes every morning, i have two puppies at home that i love more than anything, and i’m currently watching ted lasso and falling in l*ve with jason sudeikis and no i do not think i named teddy after ted lasso but it might’ve been an unconscious thing idk

anyway, i’m going to try not to ramble too much about my boi teddy but you’ve been warned:

sweet boy theodore ! he mostly goes by teddy. i don’t think he minds being called theodore but he DOES hate the nickname ted. sorry to mr. sudeikis

he was born and raised in chicago but his father is from woodstock. he has some distant family here but growing up, it was teddy, his mom, dad, and older brother mccartney ( mick !! )

( alcoholism, hoarding disorder tw ) teddy’s older brother was like a refuge for him in a household that was pretty tough to live in. his mother is an extreme hoarder so teddy felt pretty trapped in his own home. on top of that, his father is a functioning alcoholic who had a tendency to pick fights when really wasted. ( end tw )

teddy shared a room with mick, so that was like their little escape from it all ! but mick left for college because he’s a Smart, Good Boy when teddy was fifteen ! so he took it super hard to be living alone in this environment

( depression tw ) naturally, at that age ( and with evident mental health issues running in the family ), teddy started to show signs of depression. in an attempt to alleviate that, his fam fulfilled a lifelong dream and adopted a lil border collie pup ! ( end tw )

he realized his home wasn’t suitable for him, his mental health, or his dog winnie. he saved up money by working odd jobs throughout high school and on his eighteenth birthday, he and his pup moved to woodstock.

his dog winnie is named after his celebrity crush, winona ryder ! he absolutely carries a polaroid photo of her in his wallet because truly that is his child and god bless you if you even mention dogs around him

he got the job at high volume four years ago so he’s been around for a bit ! jerry was actually really good friends with teddy’s father, so he’s known jerry pretty much his entire life.

( drug use and alcoholism tw ) teddy has a chronic intestinal disease that basically attacks his immune system and can be preeeetty painful ! it’s manageable ofc and although teddy would say: “kurt cobain had it too so it’s fine,” it still Sucks to deal with. he is on medication for it, though another prescription works wonders for pain too...... and that ‘prescription’ is just Weed. he smokes a lot lol and also likes to drink, both as a source of self-medication and just because ! ( end tw )

( violence and ptsd tw ) oh haha also he saw jerry get shot in an alley but i imagine he is currently going through the many phases of ptsd at this moment. very much trying to keep it together but in reality, he’s a ball of pure anxiety and could crack at any given moment. definitely going through some bouts of denial and doubt ? jerry is not only his boss but he’s a family friend and someone he kind of looked up to, so it’s safe to say he’s not Doing Well ( end tw )

ok now more about his CHARACTER:

teddy is a sweetheart. he’s got golden retriever tendencies, i’d say ! verrrry sociable, loves to be around people.

he’s pretty independent and self-sufficient for someone who makes dumb decisions and doesn’t vibe with being alone ! he has learned to look out for himself but at the same time, he’s one of those people that make you wonder how he got this far ??

overall, a pretty great friend to have. he’s a man of his word and basically likes to make people around him feel comfortable and happy !

kinda charming, an accidental flirt at times. like i don’t think he realizes when he’s flirting ? he’s a little oblivious and definitely does better with people who are direct with him. like if you’re dropping hints that you like him or need him to do something, he won’t pick up on it at all lol the boy is stuck in his own little world that has karma police playing on a constant loop

walking into a shift with him means you’ll either be: entertained, annoyed, distracted, or high lol

( drugs tw ) like he has shown up to work high before and probably has smoked outside during a slow shift i’m SORRY ( end tw )

messy, messy boy makes questionable decisions because he doesn’t quite think them through. he’s SO responsible with his dog, but himself ? a hot mess

perhaps he’s not ... wise when it comes to money... i’ll leave it at that for now :)

perpetually running late and rambles a good amount

weak-willed and self-destructive ! he’s easily swayed to do pretty much anything bc he’s kind of a happy-go-lucky kind of dude. pretty much does Not say no to plans and maybe he pushes his alcohol tolerance from time to time

CONNECTION ideas !!

he moved to woodstock four years ago and i wanna say he lives alone but tbh a roommate would be Cost Effective ( must like dogs tho )

that being said, if your character happened to grow up in chicago let’s do some childhood connections ! maybe an old friend, previous unrequited crush, etc.

pls give me a favorite coworker that just doesn’t get anything done when they’re working together

he absolutely will get on people’s nerves. he gets on MY nerves. so give me enemies of any sort lol

i don’t think he’s much of a relationship guy. i could see one longterm relationship in his past so an ex is a possibility !

a previous one-night stand is pretty accurate for him too, but i don’t see him thinking it’s weird or anything. i see him being pretty casual with hook-ups in general, so... do with that as you will

friends ! teddy is a talker and really likes to get to know people, so i can see him having friends of varying levels lol whether you’ve spoken twice but he’s like That’s My Guy ! or you regularly see him walking his dog or you just vibe at work... truly this man will talk to a wall. the possibilities are endless

a BEST friend ! i would very much like someone that teddy spews mostly everything to. he will indeed lay his life on the line for this person lol

party-goers, fellow druggies ! this is a scene teddy OFTEN dabbles in, whether you indulge yourself or provide. >:)

could definitely see him on the receiving end of a mom/dad/parent friend kind of relationship. like that john mulaney quote GET SOME REST, TALL CHILD

okay i seriously need to stop this got so long please end me anyway hit me up here or on discord for all of the plots. i really like to get into the nitty gritty of plots so if that’s your jam, let’s make some toast, baby ! i’m SO excited to get things going !

#volumeintro #i added a few tws within this ok

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alyssabethancourt · 4 years

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Look at me when you kill me.

Hi, my name is Alyssa.

I'm 41 years old, a mother, a writer, a dog-lover, and a great big nerd. Not too long ago, I realized a couple of really huge lifelong dreams: first, I moved from the Southwest desert to the lush green east coast area where there are trees, and water, and shade, and life; then, just last year, I published my first novel.

I am also a newlywed! After surviving a disastrous first marriage to someone I never should have been with in the first place, I unexpectedly met the most amazingly perfect partner for me in 2016 and fell just deliriously in love. We will be celebrating our second wedding anniversary in October. I never, ever expected to be this happy, or this in love with another human being. We lost a lot of time being on opposite ends of the country and not knowing the other existed for close to forty years. Now every second we have together is a treasure and it will never be enough.

My life is pretty good despite a few blemishes. Money is always an issue. My health is another. I suffer from asthma, polycystic ovary syndrome, Hashimoto's disease, anemia, dysautonomia, degenerative disc disease, and agonizing chronic joint pain possibly related to something in the chronic fatigue family. I've had multiple injuries in recent years that didn't heal right and still give me the odd twinge because I never saw a doctor for them. I'm also autistic, which means I'm vulnerable to another cluster of physical and mental health issues such as gastritis and other stomach troubles, Celiac disease, sensory processing disorders, depression, and anxiety.

Mostly I just get on with things because I have a lot to live for. I spend a lot of my time with dogs, which makes me happy, and every second I spend with my husband is a joy. My second book is coming out later this year, and I have plans to write many more. I'm only 41 and my second shot at life is only just starting. I have lots of things planned.

In April of this year, just days after my birthday, I had surgery to remove my cancerous thyroid gland. It was really scary to go in for a major surgery during lockdown, and it has been scary trying to recover from surgery in the middle of a global pandemic that, frankly, not enough of the people around me are taking seriously. However, I'm now cancer-free and my doctor assures me that my long-term prognosis is excellent. For all intents and purposes, she said, I can consider myself “cured.” It's nice to know that, because my road to recovery has been and remains pretty rocky.

Still, I'm getting there.

I'm telling you all of this because I need you to understand something. When you talk about the COVID-19 pandemic and you say things like, “Only old or sick people are dying from this. Healthy people are going to be fine. It only affects people who were probably going to die anyway,” as the reason why you think we should end restrictions, “get on with it,” and “go back to normal,” you're talking about me. I'm the “sick person” who will die or be left seriously compromised if I am exposed to COVID-19. The vague someone else you're okay with sacrificing, because it's not a real person to you, it's just a statistic? It's me. I'm real.

I want you to look at my face, and read my words, and understand that you are saying it's okay for me to die so you can go out for Buffalo wings, or see a concert, or send your kids back to school. You're asking me to volunteer to die so you can stop feeling like things are weird and hard and uncomfortable right now.

Let me be clear: I do not want to die. I do not volunteer. And you have no right to demand it of me.

I wouldn't say I “live in fear,” exactly, but I am afraid. Mainly I'm afraid because very few of the people I have to interact with seem even marginally invested in making sure they don't expose me to a disease that absolutely will ruin me if I contract it. If it seemed to me, even a little bit, that my community cared about helping to keep me safe, I wouldn't be so afraid.

Instead, what I mostly see is people arguing why they shouldn't have to care. Why I'm expendable. Why my death – which is completely avoidable – is actually an acceptable cost of them being able to do whatever activity it is they want to do. Why my desire not to die is actually an infringement on their rights somehow. I'm less afraid of the virus than I am of my fellow humans, who have largely made it clear that their indifference to death and suffering means they would actually prefer for me to die, because then one more person insisting on safety measures would be out of the way. Herd immunity, I hear a lot of the time.

“Herd immunity” means me, and people like me, dying for your convenience. Millions of us. I've tried to get my head around the physical reality of the number two million – a modest estimate of the number of deaths it would take in the U.S. alone to reach any kind of herd immunity. I can't do it. It's too big. I'll never interact with anything like two million people over the course of my entire life. I'll never see two million people all in one place. It's too big. And every single one of those sacrifices to your comfort is a human being like me: with plans, with loves, with dreams and fears and many more dogs to pet and trees to climb and books to write.

I do not consent to be your sacrifice.

I wouldn't say I live in fear, no, but I do have a lot of anger these days. How dare you demand my death in exchange for your haircut? For your Disney vacation? For your dinner at Applebee's? Even, and I'm sorry to have to be so blunt, in exchange for this one specific year of your kids' in-person schooling? Yes, this is terrible and hard. No, it's not good that this is what we're all going through right now. Yes, this is going to have an impact on the children that we're going to be dealing with for a long time to come. No, my death is not an acceptable trade-off.

It is not. I don't know how to make that clear enough to you. I may be one of the “pre-existing condition” people, but I'm not “probably going to die anyway.” My conditions are managed and I'm healing and I have a lot to live for. The only way I'm dying is if you insist on killing me. You don't have to do it. You can choose to value human life more than the convenience of dinner out in a restaurant. You can choose to protect me by wearing your masks properly and washing your hands and staying home except for necessities until the virus is under control.

There is nothing foregone about our response to this pandemic. The virus will do what viruses do, obviously, but this fatalism so many people have embraced toward our handling of it is bonkers. We have choices, and America has chosen mass murder by indifference as if there's no other way. This is me grabbing you virtually by the lapels and demanding to know what is wrong with you that two hundred thousand of your friends, family members, coworkers, doctors, retail clerks, hairstylists, and teachers can drop dead in six months and your response is, “Well we can't live in fear. It's time to open the schools! Let's get back to work! I miss concerts! Fake news!”

My name is Alyssa. I am one of the sick ones. I am full of passion and imagination and I have a lot of living left to do yet, and I am real.

I do not want to die, and you have no right to ask me to.

#covid-19 #rant #pre-existing conditions #chronic illness

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uncloseted · 3 years

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I know you arent a doctor so sorry if you cant answer this. But I feel like whenever I look into people's experiences with SSRIs/antidepressants, SO many people say not to do it and that the side effects are worse than the depression itself. I don't know these people ofc, but it seems like people who haven't taken them and are just listing side effects they heard of. And then I see people who have actually taken it saying it helped them deeply. Like what? Why are some people so against them?

It's all good! I'm happy to answer. So I think there are a few different groups of people that are very vocal about anti-depressants online.

The first group is people who have taken SSRIs before and had a bad experience. In general, people who have had a negative experience with a product or service are more likely to write about it online than people who have had a neutral or good experience with a product or a service, and I think this is especially true when it comes to medications. SSRIs are one of the most commonly prescribed medications, in part because they typically don't have many side effects and because they can treat a wide variety of conditions. That said, they can have side effects that are serious, especially in children and adolescents. If you're someone who's had a negative side effect, hearing that SSRIs are one of the most commonly prescribed medications might be alarming, so I can see why some people might feel the need to take it upon themselves to "educate" others about the "dangers" of SSRIs. It's also worth noting that it can take a couple of tries before finding the medication and does that work for you, and so some of the negative experiences may be from people who tried one SSRI at one dosage, decided the whole thing wasn't going to work for them, and stopped entirely. On the flip side, if you're someone that's had a positive experience with SSRIs, you're unlikely to talk about it because there's a stigma against both mental illness and SSRIs. You don't want to admit that mental illness is something you're struggling with or that you take medication to help it. Negative stories also stick with us more than positive ones, which may contribute to the feeling that there's an overwhelming number of negative stories about SSRIs but not a lot of positive ones.

The second group is people who haven't actually taken SSRIs themselves, but who are anti-psychiatry. There are lots of different reasons why people are anti-psychiatry, but none of them are worth taking seriously. Some are anti-medication in general, usually because it's "not natural", because they don't want to be "dependent" on a medication to live, or a similar argument. These are silly arguments to me. We do all sorts of things every day that "aren't natural" (driving in cars, using computers, wearing glasses). And SSRIs are typically a short-term prescription to help a person recover from a depressive episode, not a life-long medication. But even for people who do take it their entire lives... we're okay with people being "dependent" on other life-saving medication. Way fewer people accuse people with diabetes of being "dependent" on insulin.

Other people are against psychiatric medication specifically, generally because they think it's kind of like "cheating" at life. This argument is usually something like, "I was depressed and I got over it without medication, why can't you?" or "in my day, we weren't so soft that we needed medication for being sad", or "happiness is earned, you can't take the easy way out". There's a lot to say about those people, especially in the context of the US's "pull yourself up by your bootstraps," Cultural Calvinism, hypercapitalist society, but this isn't really the place for it. These people are dumb, and I feel like they're the same people who uphold hazing rituals or are against forgiving student loan debt because "I had to go through it, so should you". It's a good thing if you can lead a happier, healthier, and more productive life with less effort.

There's also a group of people who thinks that "big Pharma" is using antidepressants to "make us all compliant sheeple" or whatever, making it seem like SSRIs are the new lobotomy. Those people are typically conspiracy theorists and not to be taken seriously.

That said, there are real considerations to take into account when starting an anti-depressant, and especially an SSRI. A meta-anlaysis published in the Journal of Clinical Epidemiology found that 79% of study authors had a pharmaceutical industry link of some sort, and that positive outcomes were more likely to be published than negative ones. That can make it difficult to know exactly how effective SSRIs are in the treatment of depression.

If you have a history of bipolar episodes or suicidal ideation, SSRIs may make those problems worse. Other medical conditions (hypothyroidism, metabolic disturbance, infections, chronic diseases, hypogonadism) and mental health issues (ADHD, eating disorders, personality disorders) may present with symptoms of depression, but need a different approach to treatment, so it's important to be properly assessed.

If you're in a life situation that's causing you distress, making a change may be more effective than starting medication, and I think there's something to be said for the idea that the modern world isn't really designed to promote mental health. Studies generally find that lifestyle changes, such as physical exercise, are more effective than medication in the treatment of mild to moderate depression in most people. Talk therapy can be as effective as medications in mild cases of depression, especially when you have a good relationship with your therapist.

Anti-depressants can and do work, and if you're struggling with depression, they can be an excellent tool in helping you to recover. There's nothing wrong with taking a medication that can help you live a more fulfilling life. But they're not the best solution for everybody, so it's important to assess your situation and your options before trying them, and it's important to view finding the right anti-depressant for you as a journey instead of a quick fix.

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brokenfoetus · 4 years

Text

...Real Talk for a Moment....

This is gonna be a long rant post, so by all means... quickly scroll past. Parts may even be a tad emo feels for some folks for one reason or another... There’s no shame in skipping for reals. A lot of days I can’t bother to read anything too in depth... anyway... HERE goes.... While I absolutely love art, and performance, and surreal awkward characterization of myself I call “THE END”. I also value truth, and being understood. My blog here started more as a journal for me to vent, and place to post music and art for me to look at in order to try and just relax during a very difficult point in my life. Every now and then I like to stop and ground myself and post in a sense about the actual me. There’s frankly not anything magical here, everyone has a story and their experiences and struggles we all do no matter who you are. I suppose like I said, I just like to be understood where I am coming from typically can only be slightly grasped like anyone. Even if you agree with views and relate to feelings, things become clearer with details.... hence my rants. I get it out of my system and state my perspectives all at once and anyone who happens to be curious gets to read it. Maybe gets to relate and frankly that tends to help us sometimes. It helps people realize they’re not alone in their situations. Anyway.... I was born a tiny premature gremlin on the east coast of the U.S. I was raised a devout Catholic boy. At age 11 I was diagnosed with the chronic illness Diabetes. when the symptoms started my mother called doctors concerned. We had to wait a full month for my appointment. It was rough. Some people don’t know of the disease, but most people generally are aware. It typically doesn’t seem all too dramatic to most since people think of it as old grandma and grandpa taking their pills and measuring their food. When you’re talking juvenile onset diabetes it’s different... severity can vary. but, I caught some sort of virus, with flu like symptoms... I was very very sick for a week or two. Once it passed, I was okay but slowly started feeling gross in other ways. By the time we got to see Doctors it was too late, and the damage done to my pancreas made it so it created pretty much no insulin. The only theory Doctors had at the time was the virus freaked out my auto-immune system so it made my body attack itself. It seemed that my white blood cells had attacked my pancreas. I was 11, so... I didn’t know what diabetes was. I asked my doctor if there was a cure, and he explained that there was no cure. My little boy brain after feeling so awful for a month and a half assumed I was going to die. I burst into tears as I was very very afraid. My Doctor quickly explained I wasn’t going to die like I had assumed and that it can be treated. It doesn’t seem so scary most the time when you realize it can be treated. The thing is the hormone insulin can be quite dangerous, as low blood sugars are actually very much more dangerous than high blood sugars. Insulin allows glucose in the blood to travel into cells to basically use as fuel. without it sugar levels rise in the blood stream, and the body starts rapidly breaking down fat cells to use as fuel. Now, that happens normal some anyway usually after eating. Just not rapidly.... when it does, the fuel it breaks down creates ketones which can make the blood toxic... by making it acidic.... Like I don’t really think... there’s any way I can describe what high blood sugar feels like... or what it feels like when your blood starts to become acidic.... I can’t... but... minor low blood sugar attacks can happen to anyone just by skipping lunch or forgetting to eat... and those suck... bad ones... well... they feel like you’re dying. Not to be melodramatic about it all... but that’s all I can say to explain it... it just feels like you’re dying. Probably because you sort of are..... The brain runs on glucose so when the levels get too low... your brain panics and tries to save itself and alert you. It’s not fun. It’s been many years since I had anything dangerous or serious in terms of low blood sugars but, a couple times in my life when I wasn’t doing very well emotionally and mentally I wasn’t paying attention or being careful with my insulin dosages and how much I was eating. I’ve had 3 grand mal seizures in my life when I was younger.... it’s hard to explain the experience... in mine... I don’t know.... It was like not existing at all, there was nothing. I woke to pain, I couldn’t see or hear it just hurt. Everything hurt head to toe. Then I could hear myself saying it hurt, then I could hear the people around me, and then I could see the people around me. Then I knew what had happened. I felt a bit guilty for scaring my loved ones so much. That honestly made me more upset than the pain. The reason I spell all this out... is my life has mostly been surrounded by fear. I’ve been aware of my mortality and trying to avoid dying on a daily basis since I was a very young boy. The strange thing I suppose.... is after a while... you just get sick of being afraid.... you kind of stop being scared and just get angry... I was a shy timid nervous little dude.... I’ve had long long times where... I’ve felt worthless, I’ve hated myself, felt I didn’t deserve happiness, or love. I’ve let people use me, without standing up for myself. I’ve let people be toxic and cruel, while excusing their behavior. While at the same time condemning myself for any tiny mistake I may have made in any way. I’ve made myself a martyr in personal relationships, sacrificing myself and my feelings. I’ve frankly... done a whole bunch of fucked up things turned inward. The nice thing I suppose, is I don’t do that anymore.... I still make mistakes, and I like to take responsibility for them and make amends or fix them. You can get used to some really fucked up things. Especially when struggling with self worth. I used to think I was useless and undeserving. Today... I’m well aware I’m a PRETTEH PRETTEH GOFF BOI.... I have long time close friends who love me just as much as I do them. I have a wonderful beautiful lovely lady who has my heart and soul whom I want to spend every moment I possibly can with until my bones are dust. Who helped me a great deal over the past couple years or so. Helped me with myself and helped me believe in myself again. Just by being my friend and supporting me while I continue to be the eccentric artist asshole I am. and I have Scrambles... THE MOST CUTEST BLACK KITTEH KAT EVAR. I feel rather lucky to have all I do. I appreciate what I have very very much. I’ve been dealing with Diabetes since I was 11... and had been dealing with Severe Major Depression symptoms since my early 20s. over the past five years I finally started getting help, Turns out I don’t just have diabetes.... I have adhd and some kind of sleep disorder. we’ve been calling it narcolepsy but it’s hard to say exactly, it could be hypersomnia which is a super fancy way of saying I’m fucking always exhausted 24/7 which is pretty accurate. That is usually caused by narcolepsy or something else but... who knows... still trying to figure that part out. I have discovered though that, being fucking exhausted non stop for 20 years will make you very depressed. Sometimes depression makes you tired, and sometimes being tired makes you depressed. When I was a young lad, I gave myself one single life goal.... That was to finish an electro industrial album and play some live shows. I dunno, to some that might not be a big deal.... I never said it had to be “good” after all. But, when I was at a low point dealing with my stuffs, trying to take care of myself... I honestly spent most my days sleeping. I was awake maybe 4 hours a day. Things felt very hopeless, that learned hopelessness made me believe things were pretty much pointless. I would shrug... and talk to my psychiatrist about my suffering in a manner that people talk about the weather. I didn’t even care anymore it was happening. It was “oh well... is what it is.” Until I got angry, it was a good thing I was so frustrated.... because it meant I finally gave a shit again. I wanted to get better and I wanted it to hurry the fuck up. Anyway... I’m just rambling and ranting because I was thinking back a lot after doing a sleep study... probably the first in a series of them. I don’t have apnea so I mean... that’s good. I also got to see what some of my brainwaves look like... I also apparently wake up after dreaming some a lot... I also apparently yelled in the middle of the night hahaha. So back to the whole life goal thing.....my long time friend, who introduced me to shitloads of music and bands and has always been close through good and bad times. Was saying how he knew it was something I’ve always wanted to do, so he wants to help me. He’s starting to help me plan the performance and then later will help me setup my shows and come with me to what will be really awkward and silly first couple gigs I play. An open mic night will be particularly hilarious to me, since instead of hearing shitty rock song covers, it will be an insane goth punk dude screaming distorted vocals to weird electro noises haha. It’s taken a long time to get shit finally going... but... it’s getting there... it’s still going to take a lot more work... on both me and the music. I have countless things I have to do, but I’m just happy I finally got angry enough to scream fuck it... and go for it... I love a lot of various kinds of work. I don’t really fit there very well though. Now that the sleep disorder stuff has become worse over time... it’s not really possible anyway. That’s okay though, since now I’m just doing what I’m actually good at. Eccentric artist asshole has always been my key features. xD So, here’s some photos of me before and during my sleep lab and random enjoyable crap I suppose... and my general mood. It’s been a while.... -The End-

youtube

#Me #Personal #Random #Pointless #Update #THE END

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mouseyfox · 4 years

Video

youtube

[Video description] A white woman with dark brown hair down to her chin and black horn rim glasses sits in front of a cream wall with a string of mint drying behind her. She is holding a pillow with a geometric design as she turns on her phone's video camera.

[sigh] Hi, my name is Krystal. I am a disabled queer woman and I am here to have a talk with you today about what it's like being disabled in the United States and trying to keep a job.

[Transcript Below]

So [sighs] there's some major issues with how we as US citizens and people in general, um, deal with disability and how it relates to the job force and how [thoughtful pause] we are treated as employees. Now the Equal Opportunities, um, Equal Employment Opportunities Act, um, was a major step forward as were similar things such as the, you know, Disability Rights movement, and the Americans with Disabilites Act, and even, you know, the Affordable Care Act. Those have all had positive effects on the Disabled Community as a whole, but there's a lot more that needs to be done. Now, disabilities are not just physical. They can be emotional, or psychological, and they can also be intellectual. That means you could see someone with a wheelchair, or a missing limb, or someone who has Parkinson's Disease, or someone who has dyslexia, or someone who has PTSD, someone who's missing an eye, someone who's deaf, blind, the list goes on, honestly.

For me personally I have been disabled for ohhh well over fifteen years at this point. I have experienced over fifteen years of abuse in my life which has triggered Post Traumatic Stress Disorder, um, DID, um, Anxiety Disorders, Major Reoccurring Depression, I have Trichotillomania, Excoriation Disorder, I also have physical disabilities as well. I have Poly Cystic Ovarian Syndrome. I also have Chronic Pain and Fatigue, I have hips that don't sit right, and a back that doesn't like sitting straight, and I also have migraines that have gotten to the point where I'm having about a migraine every week or so even with medication. I'm going in for more treatment options with a neurologist to figure out why they're happening. Now, I am a person who would benefit greatly from things like Universal Healthcare, and uh Universal Basic Income because at the end of the day I am a queer woman who is disabled and who is supporting a partner who is totally disabled as much as I can, and even just saying that could cost him his benefits, and that is heinous. We are not married, if disabled people marry and they have benefits they can loose them entirely, legally, within the US as it is today. I have a Bachelor's degree I got from the University of Louisville this spring during COVID and while I am very happy that I have finally achieved something ten years in the making for a lot of reasons it was horrible on my health both mental and physical.

As a student who is independent and was relying entirely on loans aside from very few scholarships that did in no way cover the full cost of tuition. I worked [sigh] a full time job while being a full time student at a call center uh who violated my rights as a disabled person in a number of ways and when I eventually left that job and applied for full time disability benefits, which I was denied, by the way, uhm, [the call center] lied to the SSI department, and said that I had never once filed accomodation letters to them, which is very untrue as I had spoken with an HR Director on multiple occassions, I had emailed them, I had spoken to them on the phone, I had one on ones with supervisors about how the job was affecting my physical health, as well as my emotional and mental health and how it was worsening my disabilities.

I had applied for short term disability, which is something that in the United States, is only offered by certain employers and is something that you have to pay into. There is no short term disability department with the SSI. There is no way for an American citizen currently as it stands to have short term disability to get some of the medical issues under control in the US unless you have already paid into a pool.

Now, some of you might be wondering what about FMLA, the Family Medical Leave Act? I applied for that, and they really don't like you using that for short term disability unless if it's something that was happened at the job or outside. For example, if you undergo an amputation, you might be someone who would qualify for FMLA. But, for me, a person who was just dealing with further issues with my chronic disorders that are never going to go away, um, at this point my issues are so deeply imbeded that I will have to be on medication for the rest of my life to handle my disorders and as with many people, as I age, I am as likely to get more disabilities on top of everything else.

The way that our economy, the way that our healthcare works right now we don't accomodate or help or you know just give disabled people a way to live and work without highly unfair and horrible ways of treating them. I have been gaslit by employers. I have, uh, very highly insinuated that I was lying about issues with my health just so I could go home and "be lazy", or I've been told or implied by coworkers that I was lying about my disabilities and there are all sorts of negative public stigma about people who lie about disorders so they can like get benefits. And, honestly, here's a news flash for you, it's virtually impossible to get full time SSI benefits if you're lying. I have friends who have disorders that can kill them before they turn fifty who are considered not disabled enough to qualify for SSI benefits. And these are people who are dealing with horrible diseases that will kill them or just make it really impossible for them to ever work. Like, physically, mentally, some education, uhm, or not education, intellectual disorders there's no way they're going to be able to hold a full time steady job and you know with the way that our economy works part time jobs don't cut it.

Most people are working two to three jobs because our minimum wage isn't high enough. And if you're disabled you spend so much money on taking care of yourself, and spending days at home, and that's just part of being disabled. I don't like calling off of work. I don't like being drug into my supervisor's office to get you know reprimanded for constantly having to call in or leave early. I don't like inconveniencing my coworkers either because I know that makes it harder on them, but you know what's also harder on them? If I decide to power through a day even when I'm feeling like garbage, and I make more mistakes, I will get less things done, I'll be worse off with my customer interactions, and there are days where I have worked through on ten, twelve, even thirteen hour shifts as a disabled person, and it has absolutely wrecked my health.

I have been working for ten years and I've been a caretaker for even longer, and my ability to perform at a full time job has drastically diminished in just ten years of trying to support myself in the way our current economy works and I've worked in a variety of different jobs. I've done physical labor jobs, I've worked in factories, I've worked in call centers, I've been a barista, I've been a cashier, I have been a bourbon steward, I have worked in healthcare in a variety of fields, and I have worked in library science which is what I'm hoping to get for a- for my- my education goal is I want to be a librarian. I want to be someone who helps people with research and reference work, and helps with their community. I love being engaged with my community. I love helping people. I like going to work. I do genuinely enjoy going to work! But when I have to keep working to a point that would make even a- you know someone who's not disabled overly worked and wreck their health... What do you think that does to those of us who have disabilities? Huh? Cause I can promise you it's a lot worse than you initially think. And the accomodations that they offer at most jobs are a fucking joke. They really are.

Most jobs aren't even accomodating for people in wheelchairs, for people with physical disabilities, and not to mention people who have hearing problems, or who are blind, and don't get me started on psychological problems. We could have an entire separate discussion on that one because the way that workplace cultures work and the way with microaggressions with racism, and all sorts of other factors like homophobia, transphobia, fatphobia, yes that counts, okay, because a lot of disabled people are just big, and you know what a lot of them are also really skinny, because their medical problem might be tied into that in ways that you can't understand either without a medical degree, or without being disabled yourself and having to do research.

Because at the end of the day the people who are most educated about their own disabilities are often the disabled person themselves. Yes doctors are very educated. Yes they know a lot. But you know who also knows a lot about the disorder, the person who's fucking experiencing it. I have friends who have been dismissed by doctors for years. Whose illnesses and issues have been completely mishandled and not at all treated by doctors because they wouldn't fucking listen to their patients. Okay. And, that's not something that we should be proud about as a country.

The way that we treat disabled people is horrible, and that's not even considering the problem with eugenics in this country because there are a number of people who are very interested in the fact of created designer babies, or aborting [disabled] babies, or you know, just throwing disabled people away until they die in a corner so you don't have to think about them. And that's a historical problem with this country and it hasn't gone away. We haven't fixed it. And it's something we need to work on.

But you know what? We're never going to be able to address those harder issues until we address the fact that working and having to hold multiple jobs to live for abled people that's inexcusable. It's even worse when you're disabled.

I can't tell you the number of times I have been almost homeless because my job had fired me because I had to call in too often, or I just had to leave a job because it was horribly wrecking my health. I have played yo-yo with all of my jobs for the past three years after I tried filing for disability, and you know what? They told me no. They told me I'm too young. I can't possibly have the disorders that I have or I'm just not disabled enough.

And you know what? You can be disabled at any age. And that possibility only increases the older that you get. Because the older you get your systems start failing and you will be disabled at one point in your life. Period. Everyone will experience disability before they die in some way shape or form. So when we talk about disability rights it's not just about me. It's not just about friends of mine who are being killed by our healthcare system, and by our government, and by our economy, every single day. It's also about you. So when I ask you to give a fuck about disabled people and work and listen to what we're asking you to do this is about you too. Because one day you're going to be in our position, and you know what? It sucks. And no one should have to deal with this.

[Emotional Pause] We need healthcare reform. We need it. Very badly. And when I say that it goes from everything to my own father who has been insulin rationing, and dealing with completely ludicrous insulin prices since before I was born.

It goes to my mother, you know, whose liver shut down because of black mold in a church my father preached at. I watched her slowly die for a year because she refused to go to the hospital because if she did, and she got the care that could have saved her, it would have killed my father because we wouldn't have been able to afford his insulin.

You know, and I'm not the only person, who's had situations like this, there are elderly people all over our nation who are dealing with similar issues all day. There are people who are disabled, there are families of disabled people, who are working to support people. There- Did you know that it's actually illegal for disabled people to marry and keep their benefits? Did you? Because I have a pertner who is disabled and even just saying that could rob him of his benefits.

That's not including issues with disability and, you know, being queer. Because being queer complicates everything. You know I don't say that because it's fun and I get "all the social benefits it brings" as Rosalarian would say because you know what? There really aren't any.

I'm queer because I'm queer. I'm disabled because my body is a pain in the ass, and because I've gone through things that no one ever should have had to go through and it has completely wrecked my mental health.

And I've gotten so much better than I used to be! I used to be so much worse off and put up with stuff that was absolutely wrecking my mental health and physical health because your mental health does a lot of stuff with your physical health that you might not be aware of. [Cat sneezes]

The United States as a nation is literally working itself to death, and that doesn't just affect able bodied people. It affects disabled people a lot worse. And you know what, I like working, but I like living a lot better. [Turns off video]

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cookinguptales · 4 years

Text

Today, SCOTUS is hearing arguments about whether businesses should have to cover birth control for their employees in their health insurance plans and I just. It’s hard to read.

I was going to make up this big informational persuasive post about the situation. But I’m just. I’m just so sad and angry and tired. So I figured I’d make an emotional one instead.

Let me tell you about my hormonal birth control journey.

(Rest under a cut for length and content. cw: mental illness, graphic discussion of medical issues, injuries, & menstruation, discussions of suicide & self-harm, discussion of opioids, alcohol, & recreational drug use.)

I started taking hormonal birth control late in high school to help regulate “painful periods”. It wasn’t for actual birth control at that point and I hadn’t been diagnosed with any disease, not even POTS yet. I just had “painful periods”.

Things were okay for a little while, but when I got to college, things started to fall apart. The double whammy of undiagnosed mental illness and a barely-diagnosed chronic illness (POTS was relatively unknown at the time and my doctors gave me information which I now know is incorrect) really caused me to spiral during my first year of college. I didn’t know it yet, but I react very poorly to some forms of hormonal birth control. Put succinctly, they drive me batshit insane. On one pill, I literally did not leave my apartment for over a month. I became very literally agoraphobic. Bouncing off the walls, irritable, angry, high suicidal ideation. As bad as side effects can be.

But I didn’t know that yet. I just stopped taking BC as part of the whirlwind of medicines and doctors that my life became for about two years while I was on my (first) medical leave from college.

My ribs were coming out back then. I didn’t know that yet, either. I knew that when I was around 16, I started getting severe back pains. The first time it happened, I had to go to the ER because I couldn’t breathe and my teachers thought I was having a heart attack. I got a narcotic shot in my butt. It did nothing to dull the pain. That’s how much it hurt. But it went away on its own eventually and I over the years I started medicating reoccurrences with a lot of different things. Physical therapy. Muscle relaxers. (Medically prescribed) opiates that made me puke. Prescription strength Advil. Wine.

I didn’t see that it was all connected yet. Not yet. I didn’t realize, with my periods as irregular as they were, that the back pains were coming around the same time in my cycle each time.

My “painful periods” got worse. I talked to an OBGYN, with my mother in the room. I told her that I was scared of something like childbirth. I knew that my blood flow was dangerously bad. What if the fetus didn’t get enough blood? Oh, my doctor laughed, that wasn’t a problem. The fetus would always get enough blood. The risk was that I wouldn’t. That it, like the tiny vampire it was, would take it all until I simply died. If I got pregnant, I would likely die. I asked about permanent sterilization. My mother cried. My doctor said no. I didn’t ask again.

I went back on birth control.

It was odd. I didn’t want children before that visit, not really. I was so tired all the time. I knew I’d never be able to manage to raise a child — and honestly, I didn’t care to try. I was so depressed. I was so sick. It sounded like so much work. I still don’t want to have kids. But it still feels… weird, knowing that I can’t. And knowing that I could die if I get knocked up.

I’m bisexual, but I have zero sexual contact with men (because I don’t love them, despite being somewhat sexually attracted to them) and zero sexual contact with people with penises (because they could literally kill me and it would be no one’s fault). But I’ve been followed home by men before. I’ve had cabbies lock me in and ask me for a date. I’ve had men who won’t take no for an answer. And my god, it terrifies me that I might have to deal with both sexual assault and a slowly creeping murder all at once.

(It’s laughable to think he’d be tried for both.)

I ended up getting sick off birth control a few times. I went on and off it periodically during my college career. I now in retrospect see that a lot of my “meltdowns” were a combination of discrimination-based stress, physical breakdowns, and hormonal whirlwinds. At my worst times, I was on birth control. The wrong ones.

My periods, over time, got worse. My back would hurt. The cramps were unbelievable. I couldn’t feel my legs. I could feel them too much. I couldn’t keep food down. I’d be so angry, so sad, so everything.

I went to the doctor again. I was diagnosed with both endometriosis and PMDD. PMDD, or premenstrual dysphoria disorder, is like PMS on steroids. I remember telling my doctor, in halting tones, that I wasn’t well before my periods. That I always had depression, always had anxiety, but I wasn’t well before periods. At her prodding, I confessed that sometimes I would just lie there for hours, for days, in the fetal position. That I’d clutch at my own arms, mooring myself, because I knew that those white knuckles were the only thing between me and killing myself. That my brain, always somewhat malevolent, became an inescapable mantra of death. That I’d just lie there and sob because it took everything I had not to hurt myself. That I’d find claw marks, bruises, on my arms later, and all I could do was get some ice.

It was better than the alternative.

I told my doctor about how painful my periods had always been. How I’d heard a story once about, y’know, that Spartan boy? The one who hid a fox kit under his shirt during an examination and stayed perfectly silent even as it clawed at him so he wouldn’t be caught with it? How it tore at his stomach until he fell down dead, still silent? I told her how I felt like I was holding a fox kit every damn month and sometimes I couldn’t stand the pain of it. Sometimes I considered ending that pain, one way or another.

She put me back on birth control.

A little less than a year later, or in layman’s terms, about a year ago, my mental health was so bad again that I was almost committed. Literally committed. I had to go stay with my parents for a few months while I transitioned to new medications because it wasn’t safe for me to be alone. I learned that the birth control I was on could create those symptoms — but they didn’t start until months after you’d started taking it. So you didn’t realize it was the medicine. You just assumed you were crazy and unlikable and so, so angry. At the world, at your loved ones, but mostly at yourself.

I learned, around that time, that I also had Ehlers-Danlos syndrome. That the pain I felt every month right before my period wasn’t just cramps. It was my bones coming undone from their sockets. It was my hips dislocating. It was my ribs popping out of my spine. I realized that that lump my parents could feel in my back wasn’t a hard knot of tense muscles. It was my fucking rib poking out of my back. I learned that there is a period right before menstruation that mimics a period during pregnancy where your joints loosen — your body thinks it is preparing you for birth, for loosening your pelvic cavity so an entire head can pass through. For someone with Ehlers-Danlos syndrome, that period of joint looseness was enough to wreak absolute havoc on a system of already-weakened joints.

I learned how to put my own ribs back in with a foam roller. I started drinking marijuana tea for the pain. I went on a different birth control. I stopped taking the placebo pills. I had to fully eradicate that entire portion of my cycle. Goodbye PMDD and ribs constantly popping out. I don’t miss you!

I am still on that pill, y’know. Every day I take it and wonder if I’m one step closer to the day when it inevitably destroys me. The last one took about a year. Tick tock.

Or maybe I finally found the one that works… I really just don’t know.

The fact of the matter is that I have a full handful of maladies that require birth control so I can function. PMDD, endometriosis, dangerous pregnancy, EDS. I need hormonal birth control. I would probably be dead by now without it. The PMDD especially was that bad. My internal organs are likely a scarred-up mess. But the birth control itself almost killed me, too. God, it was close.

Simply put, birth control is heaven and hell all wrapped up in a pill. It treats illnesses and it prevents pregnancy. In other words, it provides you with both freedom and peace of mind. It is absolutely essential. But it’s also monstrous. The sheer number of sometimes-deadly side effects that come with hormonal treatments is staggering. Which is why you need to be under a doctor’s careful eye when you’re on it. You need to be free to choose whichever brand you need. You need to be free to switch kinds at a moment’s notice. None of these things are possible in a system where these pills are not fully covered by insurance.

(And yes, I know, this is a stupidly American problem in so many ways. Obviously the ideal thing here would be single-payer for all medical procedures. But that’s not up for debate here and insurance for BC is. Because for some reason we let some people’s religious convictions determine others’ health care. But I digress.)

Please don’t worry too much for me. I have a good employer who has told me in no uncertain terms that I don’t need to worry about my healthcare coverage. But there are so many people just like me. Who may not have diagnoses yet. Who may have “problem bodies”. Who only know that they need to do something and that they might have to go through several pills to find it. Whose employers either have the strong religious belief that hormonal birth control is a sin or the strong religious belief that they want to pay as little as possible for their workers’ health care. (Call me cynical.)

Those are the people I worry about. Those are the people I feel absolutely sick over as I watch the SCOTUS argue whether we should be allowed to have life-saving medicine. The people who I know will fall through the cracks the second that the cracks are widened enough for them to do so. The people who will die.

It’s a tense time right now. It’s a tense time for very obvious reasons. But this morning I find myself to be even tenser, and my stomach hurts thinking about it. It feels like all I can do is stare at a pill packet and remember every horrible reason I need it and every horrible thing it’s done to me and I just.

It’s a lot.

#long post #just me #handsoffmybc #birth control #feelin some kind of way this morning #please mind the cws #PMDD is one of those illnesses that I wish was more discussed #I feel like one day I'll make an entire post about how dangerous PMDD is #and how our cultural dismissal of PMS is dangerous #and unfair for that matter

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mudaship39 · 4 years

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Heart of Fire Dragon Soul of Flame Phoenix and Sea Fairy Ocean Blood Uncut and Uncensored Version Excerpt

For those interested in reading more: The cut and censored version is my pinned tweet on my twitter mudaship39. The uncut and uncensored version is on a google doc on my google drive

I wonder if someday I can find a Polynesian Indigenous Pasifika wahine or vahine

Who is okay with me being an Asian Native

Who is okay with me being Southeast Asian, European, & East Asian

Who is okay with me being a mixed Vietnamese, French, & Chinese person of color

Who is okay with me being trans

Who is okay with me being nonbinary

Who is okay with me being genderfluid, bigender, or pangender

Who is okay with me being mahu or maohi/raerae

Who is okay with me having a male spirit and female spirit

Who is okay with me being queer

Who is okay with me being bisexual, pansexual, polysexual, or omnisexual

Who is okay with me being polyamorous

Who is okay with me having other partners

Who is okay with me being disabled

Who is okay with me being autistic

Who is okay with me being nuerodivergent

Who is okay with me having add, adhd, & ocd

Who is okay with me being chronically ill

Who is okay with me having Crohn’s disease and ulcerative colitis

Who is okay with me being mentally ill

Who is okay with me having depression, anxiety, panic attacks, bipolar disorder, & post traumatic stress disorder

Who is okay with me being low income poor

Because these are all facets of my identity as a marginalized person who is a member of many marginalized communities

I have been through a lot not to be with a partner or partners who don’t accept every part of who I am

I will not accept anything less

As a disabled person

As someone who is queer and trans

As an Indigneous person

As a mixed person of color

I hope that they will be part of my journey when I finally go home to Tahiti

To connect more with my culture, language, traditions, & spirituality

To be there when I reconnect with my community

To reconnect more with my family or whanau

To reconnect more with my clan or hapau

To reconnect with my nation or iwi

To be there when I get Polynesian Tahitian Indigenous Pasifika tatau or tattoos

On my body on my face, neck, chest, back, upper arms, & lower arms

To be there when I find out more about my na kupuna or ancestors

To be there when I find out more about my sacred mountain or male ancestor

To be there when I find out more about my sacred river or female ancestor

To be there when I find out more about my kuleana or responsibility of being a mahu or maohi elder and healer

To be there when I find out more about my kuleana or obligation of being a storykeeper, orator, & storyteller

To be there when I am finally home after being stolen from the earth, ocean, & sky

A long time ago as a displaced state side disconnected diaspora

My ancestors or na kupuna

My Ocean Mother, my Sky Father, & my Earth mother

Has been waiting for a long time

For their mahu or maohi child to come home

Who is sometimes their son

Who is sometimes their daughter

Who is always their nonbinary child

Their heir, descendant, & successor

With a body born out of fire, flame, & water

With a fire dragon heart, sea fairy aura, & flame phoenix soul

With a body made out of earth, ocean, & sky

With bones made out of jade

With roots made out of white lotus flowers and hibiscus plants

Their child No’eau Aitonui Hoata or Ngoc Dinh Nguyen

#indigenous #indigenous artist #indigenous writer #ndn #ndn art #native #native artist #native writer #ndn artist #ndn writer

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alltheangstmygifttoyou · 4 years

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Update On A Family Curse

So In case you follow my story A Family Curse you know I put it on break after a hard event. I’ve been thinking about the story and where the block in writing it is coming from and I think there’s a few reasons why I’m struggling to write it. I’ll explain below the cut because if you’ve read the story and my author’s notes on it you know it deals with heavy personal topics. Let me know if I need to tag anything else, I don’t want to upset/trigger anybody!

Tw: self harm, unspecified eating disorder, dysphoria, chronic illness, purging mention, weight problems, eating mention

I’ve talked about in the authors notes and in the comments of the story that a lot of Greenland’s self destructive behavior is based on my own. I started self harming five years ago and have been trying to quit for the past three years. I started this story last year as a well to write down my urges instead of doing them in person. Sometimes it helped and sometimes it didn’t. I still get those urges but they’re not as overwhelming as they used to be. However when I write this story I put myself in Greenland’s head, and I put myself back into the mindset I used to have, and sometimes that makes the urges worse. There is also the problem of America’s which is about to become relevant to the story. Many people have already guessed that America in the story struggles with an eating disorder. I do not have an eating disorder, but I do struggle with thoughts about eating and weight. I was diagnosed as obese two years ago and due to further health problems (graves disease and over medication) gaining and losing weight quickly has been a problem. Combine this with stress with school starting back up and I now have an inflamed stomach lining. These past few weeks eating has been really hard. This is not the first time this has happened to me. I’m lucky if I’m able to eat two meals in a day, most days it is just one meal and applesauce. Pain combined with body dysphoria makes me feel sick whenever I eat. I’m worried that writing America with this problem will exacerbate my own thoughts. I know his thoughts won’t exactly match mine since we’re dealing with different problems but this wouldn’t be the first time I wrote about a character with an eating disorder and sent myself down a rabbit hole of trying to make myself throw up in the bathroom because I can’t stand looking at my own stomach.

Now, this doesn’t happen every time I try to write the story. It’s just when my mental health is already in a bad place. I was given new medication for add and it’s been helping with my energy levels so I feel able to write and draw. I’ve been writing an alternate universe to A Family Curse to help keep myself in the world of the characters so when I come back to writing I should be in the right mindset. I will not be posting this story since it is me trying to work through something else going on in my life. I will however post small bits here on tumblr if I feel they are good enough to show the outside world.

Another problem going on with A Family Curse is my writing style. I am a pantser, I do not outline my stories. When I do I run into problems of being bored and unmotivated. I became so worried about A Family Curse and making sure that it turned out good that I outlined how the next twenty or so chapters would go in my head, and as a result, I find the next few parts very boring to write. In my head it feels like I already wrote it. So I’m hoping that with time the details I came up with will fade in my mind and I’ll be able to come to the story fresh.

I can still take questions about the story and be okay and I’m happy to answer any questions that anyone has. I know some people say the story has helped them and I’m really happy about that, that’s one of the reasons I started posting the story. I’m not giving up, I want to finish this story. I just need to get myself in the right mindset not to write my characters not copy them. Thank you for reading this story and supporting it, it really means a lot to me! I’ll be sure to let you all know when the story goes back into development :3

#a family curse #self harm #eating disoder #dysphoria #chronic illness #tw purge #hetalia

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kingofthewilderwest · 5 years

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Aurgh it’s hard as fuck when your main squick is something that’s popular with like, almost every other human being ever, and is intended to be one of those safe everyday conversations you can have with both intimate friends and complete strangers. Where it’s supposed to be a thing that humanity uses as a uniting, welcoming, bonding force... but to me it’s just... a really uncomfortable reminder of a host of bad things.

I’m talking food here.

Food conversations often make me feel uncomfortable. Vastly uncomfortable. There’s an intricate set of conditions for which conversations I’m fine with and which will bother me, but no one except me is going to know all that minuteness. Point is: food conversations, food socialization, it’s everywhere. And it’s so hard to handle. Because i know everyone wants to be nice and they’re reaching out to me, but every time they do that kind gesture, it’s alienating and disturbing me more. And so 9 times out of 10, I put on a polite face and humor them because I don’t want to hurt them. I don’t let them know it bothers me.

Dudes I am like, always trying to minimize my discomfort for others, because I know it’s impractical to act otherwise.

Which means I’m constantly living in a state of internally squirming.

Let’s be clear: I am someone who’s pretty comfortable giving feedback to friends, talking back and forth about what does/doesn’t work between us. I’m not someone socially anxious at approaching topics like these. I’m FINE telling friends, “Hey, I don’t like X, how about we do Y?” But just... food’s an impossible battle, dudes, and you can’t do it to complete strangers, to EVERYONE you meet, to EVERY circumstance you go through... it’s just... it’s a losing battle and I’d rather be polite and not make others feel uncomfortable, than constantly jut out to no good result.

For like. The one time out of ten I ask people (usually close friends) to avoid food-related actions and conversations, it’s a roll of the dice whether or not their behavior changes, even when they don’t complain “That makes it hard to talk to you!” Usually the confiding conversation changes little. Even when they’re trying to do something.

The problem is that food reminds me I’m socially ostracized, and it reminds me of a lot of the mental illness and self-care issues I’ve chronically had in my life. In fact, food is a really good symbol of everywhere I just STRUGGLE so like, yeah, surprise surprise, I hate hearing and talking about it and stuff.

So like. Number one. I have Celiac Disease. I got diagnosed as an infant (praise God) and have lived a strict gluten free diet my entire life, even before most people knew what the word meant or knew the word existed. I have pride for being a Celiac, but I don’t like what the social impacts are. I learned to turn down food offered to me. Which is like. A lot of the time, dudes. Humans bond through food. But growing up without food bonding is....... yeah wow, dudes, apparently it messes you up, who knew.

1. You gotta turn down the dinner invitations for people who want to cook for you, knowing they’ll have nooooo idea how to prepare safe gluten-free friendly foods. Or, you don’t want to be a Drastic Social Burden(TM) that’s difficult to prepare for (because there’s so much RESEARCH they’d have to do, and so much I’d have to DOUBLE CHECK for them, just to make sure I could eat one fucking cupcake). So any time there’s a social gathering around dinner that isn’t going to a restaurant, it turns into a major cringe reaction for me, wishing that this hangout were literally ANY other time of day.

Mealtimes, which everyone else uses as a way to bond with one another in a positive, delightful way... are one of the Biggest Ways to make me feel alienated, uncomfortable, socially burdensome, on edge. Instead of making me feel included, I feel all the more aware I’m the odd one out. During the times people *DO* actually cook gluten free for me, I feel an unending wave of gratefulness piled on social burden, because they had to go out of their fucking way to figure this out, due to the problematic nature of me having strict dietary restrictions.

2. You know how often food gets offered to you as gifts? I have to constantly turn down those gifts. I already lack gift giving abilities; turning down gifts is socially cumbersome but something I’m always waiting to have to do. Instead of ever feeling grateful someone offered me something (I know they mean well), I have to ruin the moment by asking to see the packaging for the ingredients list, or saying “no”. And someone saying “I’d love to cook for you!” just makes me think “oh god oh god oh god NO. please NO.”

3. Really fun hanging out with friends and “Let’s go eat” and you have to veto 3/4 of the restaurants they want to go to because you can’t eat there. Frankly, I often succumb to “Pick what you want, I’ll figure something out for me.” My friends don’t like that and insist to include me (food bonding [sigh]) but yeahhhh, I like to wimp out on that rather than bother.

4. Oh hi guess what it also goes into being left out of religious experiences like church communions. Until larger churches started offering gluten free wafers to replace bread... if I wanted to be included in communion... I either had to whisper something to the pastor before she gave me bread, or I’d have to give her my gluten free bread ahead of time so she could give it to me specially (this is what my mom did for me, who always tried to make me feel included as a little kid... bake me my own cakes for birthday parties... arrange this stuff with the church... what have you). And let’s not get started on the awkward conversations I had when friends invited me to seder and I had to do a lot of make-sure-ing there too.

5. Okay guys you know how COMMON it is for people to text you food pictures? Look what I made. This is my dinner. What have you. How that will IMMEDIATELY set off my discomfort??? But if I don’t respond, I’ll get a text half an hour later, “Hey, did you see my concoction?”

6. Ngl this makes me 300000x more nervous if I have to do any food-related hosting event. Even if it’s “bring something to the potluck!” it throws me into so much distress. Now *I* have to pick food for *someone else*, when I live in a world where no one knows how to pick food for me. It makes me uncertain what to bring, what’s acceptable to bring, etc. I mean, I guess the one thing I have going for me is I make sure I bring stuff ANY person of ANY diet can eat, but like... there’s so much social discomfort. I get even more uncomfortable at the thought of trying to cook meals for people (doesn’t help I can’t cook to save my life) or hosting social events with snacks in them (ex: movie nights).

THERE IS A REASON I DEFAULT TO “HEY WHO WANTS TO GO OUT TO DINNER, I’LL PAY!!!!” it’s the one non-uncomfortable way I can show my love to my friends, while dealing with a physical need I know they have (hunger). It’s not the “best” bonding way, but I try to minimize those experiences, get out of them, but like... if I’m offering to buy you dinner, THIS IS ***THE*** BEST I CAN DO AND I AM DESPERATE TO DO IT BECAUSE IT IS THE ***ONLY*** WAY I CAN FOOD BOND WITH YOU AND I KNOW YOU NEED THAT.

On and on and on and on and on.

Like, on its own, living with Celiac is damn EASY. It’s not hard to cook and eat gluten free meals. But it’s the interaction with all the other human beings, who default to eating gluten-filled meals, and trying to get me in on the socialization of gluten-filled meals... that makes it so problematic to navigate. And means I’m constantly feeling socially........ jutting out. Square peg in round hole phenomenon.

But it’s not just the fact that everyone else grew up bonding with food and meals... and I was separated out and couldn’t bond.

Uarghghghg it’s not just Celiac. Celiac is simple. Celiac is normal. I’m 100% chill with the fact I have it, and I actually get angry when people suggest it’s something that should be “cured.” Fuck you dudes, I’m normal, I’m healthy, my life is great, it’s not my fault you like wheat and think I should like it too.

But. Where things get really emotionally hairy. It’s that food is a pinnacle of my non-neurotypical issues. I forever screwed up my diet in college when I got so depressed I quit eating regularly and lost something like 10-15 lb (which was... like... 10% of my body weight, yiiiiikes). It became this... self-imposed contest... where I tried to skip as many meals as possible. It became a Rule that I didn’t eat Sundays. It took years for me to eat 2-3 meals a day again. And it forever impacted the health of what I ate. I have really baaaaaad diet.

And diet is always the first thing to get impacted when I have a depression-y spell. It’s the hardest thing for me to get in control to try to take care of myself. I’m CONSTANTLY struggling to take care of myself even during my happy periods, when it comes to food, and so you can only imagine what happens to my diet when I’m in my many bad spells. Food represents the constant struggle, the constant inability for me to function. It sometimes feels like the symbol of my mental illness. It’s a battle I am constantly, constantly, constantly, constantly fighting. I’m fighting to get ONE meal a week that I’ve fucking cooked for myself. I’m fighting to eat things that could be called “meals” at all (don’t worry, I get my calories and shit in, I eat very regularly, I snack all the fucking time, I’m not underfed, I’m fiiiiiine, it’s just not... good nutritional value, and it relies heavily on restaurants or non-scratch non-recipe items).

And when food is the epitome of so many bad things - inability to fit in socially, inability to take care of myself, a memory of times when I collapsed psychologically my freshman year of college and went into eating disorder mode... like dudes, I’m sorry, I’m not going to enjoy photos of your macaroni and cheese you texted me. It’s going to make me go into instant Red Flag Mental Mode where I’m thinking about nothing except constant internal battles I fight.

And yet.

Oh goodie.

Food is The Go To socializer. Food is a Nice Easy Topic. Food is everywhere, and I just bite my tongue and smile and tell someone, “Looks like a tasty dinner.”

#venting time sorry #food #non-dragons #my life #don't mind me #100% unedited long rambling mess #interactions fine but please don't be squishy or rose-tinted thanks <3 #also if anyone's curious: there are ways I know how to sidestep making someone feel uncomfortable when food is their squick #I know solutions that work for me that make me feel at home and comfy #anyway #[cough]#on with your lives <3 #also note: this is venting #this is NOT a problem-solving session <3 <3 <3 thanks <3

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heatherwitch · 5 years

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Sorry if you would rather not talk about it, but I was curious about your story of Lyme disease? If you would rather not talk about just ignore me please.

Hi! I don’t mind at all! It’s hard to share just a bit, andI’m hoping that sharing it all I may help others, so here’s a massive worddump (adding a read-more):

This spans from when I was a young teen (12 or 13) to now (I’m in my 20’s):

It started with migraines when I was a young teen. They wereawful, but I didn’t think much of it since many teen aged girls are prone to migraines.They were pretty consistent though and built up to the amount where they couldbe considered chronic. I told myself to suck it up, and tried to move on withmy life.

About 6 months I started gettingintense stomach pains. They made it hard to eat, but I still forced myself to.Even with eating a healthy amount, I was losing a lot of weight - which wasconcerning. Stomach pain became a constant in my life, and I started to loseenergy.

I went to probably 5 or 6 General Practitioners. They gaveme questionnaires obviously meant to see if I had anxiety, depression, or aneating disorder. I saw a nutritionist who told me I ate healthier than mostadults and I needed to find someone who could tell me what was wrong – because itwasn’t my eating habits. I saw a GI specialist who did an endoscopy and said “yepthere’s some irritation, I have no clue what’s causing it, goodbye!”.

I was tested for food allergens and restricted my diet evenmore, ensuring I was doing everything possible to help my stomach be happy.

On of the GPs slapped the diagnosis of abdominal migraineson me and told me that “a lot of teenagers hold anxiety in their tummies”. Iwas a content, homeschooled teen who spent my days running around the woods (orat least I had, before I started to feel awful). We didn’t see that doctor again.

Every doctor I went to, my mom requested they test for Lymedisease, just to rule it out. They all refused, because I never presented an EMrash.

I was starting to present other symptoms. I was getting amaximum of 4 hours of sleep per night. My joints hurt a lot, and I had backpain. I often had unpleasant sensations on my skin (crawling, burning, etc.). Iwas exhausted, to the point that most people in my life were saying “please findsomeone who will help you, I know you and you are not okay”.

Finally found a doctor who ran the right tests andwent “oh FUCK you have a lot of infections and some of them will kill youif we don’t get you on antibiotics”. So began my 3 years of being on 1-3antibiotics at a time and an antiviral. Sadly, this doctor didn’t tell me abouthow long-term antibiotics can mess up my system and I had no clue I should’vebeen taking probiotics. Again, I was a younger teen who had always been tolddoctors know best.

Nothing seemed to be working. Doctors had tried multiplediagnoses and given me medications for them, but they did nothing. The antibioticsseemed to be helping, but whenever I went off them I felt way worse. And theside effects from them were making me feel terrible (for THREE YEARS).

I went to a naturopath who tested me for a lot of things,including Lyme (test came back negative) and she found a lot of imbalances and deficiencies.I was put on supplements, hormones and probiotics. She started to help me feel better,and she was convinced everything was from some tick-borne illness. She disappearedsuddenly. I have no clue what happened to her, but I had to find a new doc(AGAIN).

This turned out to be a blessing, because I found an amazingLyme literate naturopath in Seattle (who I have now been seeing for a couple ofyears). He’s helped my body recover from those many years of antibiotics,helped me get many of my co-infections to manageable levels and most of all, hetrusts me. He realized early on that I know my shit. I’ve done my research. I’mcritical and want to know the reason behind his choices and treatment plans -and he respects that. He treats me like an equal and understand that I know mybody and its illnesses better than anyone else ever could.

I finally tested positive for Lyme disease almost exactly ayear ago, although I knew I had it for a couple years before then. It’s onehell of a process to get a diagnosis. I feel VERY lucky to have finallyfound some doctors that believed me and ran the right tests. A lot of peoplehave to travel (perhaps even fly) to find a doctor who will believe them, butthe Seattle area has quite a few Lyme literate doctors – if you’re able to payout of pocket, cause many are at private practices and insurance doesn’t coverchronic Lyme treatment.

I never found a tick on me before the age of 14 (again, I started presenting symptoms around two years before then). I never got a rash, and probably chalked up the initial symptoms as the flu or a weird bug. I had absolutely no clue what was going on. It started with two, main symptoms and over the years my body began failing me. I was terrified and very few people believed me. I was accused of being a mentally ill, attention-seeking teenager.

#mouse squeaks #anon #aboutlyme

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