#i mean i was just officially rediagnosed so | Explore Tumblr Posts and Blogs

samtheflamingomain · 2 years

Text

sometimes our problems are caused by having problems

In society's haste to destigmatize disorders like anxiety and depression as a "chemical imbalance" one cannot control, I think we accidentally did ourselves a little dirty.

See, and hear me out, lots of people diagnosed with Medical Depression do not have Medical Depression. They have all the symptoms of someone with Medical Depression - but the cause is not a chemical one. It's a social one.

"Situational Depression" is a well-established phenomenon, yet rarely acknowledged or put into the mental illness conversation.

If you're miserable from living in abject poverty, no SSRI is going to make you less miserable. Y'know what would? MORE MONEY.

Between telling all the younger generations that if they're sad it's a medical problem and that money doesn't by happiness, it's the perfect equation for a generation of depressed poor people pissing through depression treatments and never getting better.

Of course Medical Depression is very much a real, proven thing. But I think pretending 100% of cases of Depression are actually Medical and can't be improved by an increase to one's quality of life actually lets people in power keep our quality of life shitty.

In my personal case, I'm depressed because I'm poor. I'm poor because I'm disabled and receive the "Ontario" "Disability" "Support" "Program". I mean, I guess Ontario is right. Calling a monthly $1100 payment "support" is very generous, unlike my monthly $1100 payment. That's $13200/yr. Show me a single person on earth making 13 grand a year that isn't depressed.

I got my first Medical Depression diagnosis at 13. After a few months of therapy not helping, I started my first SSRI at 13 and a half. That was 14 years ago.

Before my first manic episode that officially made me Bipolar, I tried well over 150 different Depression Drugs - not just SSRIs, but medications made to treat, specifically, Medical Depression.

Not only did none ever work, I never even experienced a single side effect (at least that was bad enough to notice). I gave each new drug the standard 6-8 weeks to start working, then onto the next one. For 8 years.

Then when I was rediagnosed with Bipolar 1, it all made sense why Depression Drugs didn't help - Bipolar Drugs are different. So then I tried all of those. I do have a pill that works on one thing - keeping me from getting manic. Y'know, the only part of my life when I'm not extremely depressed. Relax, I do take my meds, it's not worth it for me to not.

But here's the thing: I'm not Medically Depressed. I'm Situationally Depressed, and always have been. From abuse as a kid, and poverty as an adult.

I had chronically bad health as a kid in a lot of random ways. Migraines, strep throat every few months, heat intolerance. Many therapists have gotten me to the point where I consider those things caused by the stress of always being afraid for 18 years straight.

Then, when I was 19, on November 16th 2014, I woke up refreshed for the last time. Since then, I have not felt awake. I have not woken up feeling refreshed. Not. Once. I forget what wakefullness feels like.

After 8 long, frustrating years, I finally got diagnosed with Idiopathic Hypersomnia - literally, "too tired without explanation". As a rare, neurological, sleep-related disorder, it's possibly the least-understood problem your body can have.

The studies they have done - few and far between - are very, very hard to draw large conclusions from, but there's one thing that's pretty consistent: it never gets better.

Brain science is tough. Sleep science is the top 1% of hard sciences. We barely know anything about sleep itself and advances in knowledge are slow even by scientific standards.

This means a few things: firstly, there's little incentive and ability to study it and develop treatments for it. Secondly, even if they put every resarcher in the world on solving IH, it could take forever, or it could forever remain a mystery. Which brings me to what was the most horrifying thing I had ever concieved: Chances are very likely that I will never feel wakefulness ever again.

The reason I opened with Situational Depression is because I think IH, at least from the very few anecdotes I've read, is kind of like growing up abused and developing migraines as a stress response. Except, instead of being a result of abuse, it's a result of chronically bad sleep.

For example, one person on the tiny subreddit mentioned they have always had severe insomnia and never got it treated until they were in their 20s, then had their last refreshing sleep. When the sleep study and diagnosis was handed down, the doctor explained there's no definitive cause, but when she told him she would lay awake for up to 5h a night every night as long as she can remember, he said that could very well be the cause - but he can't say for sure.

I also had insomnia for a while, but never that bad and rarely that chronic. Instead, the thing that fucked up my sleep from the ages of 9 to 19 was my active effort to avoid sleep at all costs.

I woke up May 12th, 2004 to the sound of obnoxiously loud and dirty sex. Even headphones in, full volume on a shitty mp3 player, I could hear them.

While multiple therapists have validated this as a traumatic experience, I still feel a little silly saying that that one night completely ruined my childhood. But it did. And when I tell the story, unless it's to a professional, I always downplay just how awful it was.

After a few months of waking up to them fucking a few times a week, I started working my way through dozens of ways I could try and work around it. Because when I woke up, I felt paralyzed, absolutely convulsed, cried and would have to lay there listening for sometimes several hours.

The strategy I eventually had to use was as follows: stay awake till they go to the bedroom, taking a 1/4 risk that they'll just do it in the living room and I'll be trapped. The minute their door closes, mine opens and I tiptoe down to the basement, sit in the dark for 3 hours, then, praying they're done, go back upstairs. It was the only way to nearly-guarentee I wouldn't hear them.

I did this every night from the age of 11 to 16. For 5 years straight, I was lucky to get 4 hours a night. Anywhere from 0 to maximum 6 or 7 on a non-school-day. Then when I discovered over-the-counter sleeping pills at 16 I stopped.

While I didn't tell this to the sleep doctor, if I had to guess, this is probably the direct cause of my IH. Maybe a gene is wrong or I'm missing a chemical, but like my brand of depression, I'm starting to question the Medical-ness of my IH.

Which is a weird place for me mentally - cuz for 99% of my life, I've been desperate to convince any and all authorities that no, it's not my diet/meds/exercise/sleep hygiene and most-blamed, my depression, causing my endless fatigue. To get the diagnosis, I had to get doctors to take me seriously, and giving them any reason to blame my childhood for my problems and say "go to therapy" wasn't coming out of my mouth, and therefore, wasn't in my brain for a long time.

I became convinced that it's a medical mystery and my only hope would be a miraculous scientific breakthrogh or Dr. House himself leaping out of the TV.

The only recommended medical treatment, that might work maybe if you're lucky and Mercury is in retrograde, is Ritalin and its siblings.

I'm currently on a dose of Adderall recommended for severe ADHD, and just shy of a dose that could get a normal person high - like, cocaine-lite. I can and have taken my Adderall and then fallen asleep an hour later. When asked by the doctor if I had ever done coke and I said no, he said, "Good, because even cocaine would not make you feel awake."

So I did what I had to to get the diagnosis to get the okay to start Adderall. It helps with my brain fog that comes with the fatigue but it doesn't wake me up. Mostly I did all that so I can say that I've tried everything.

And for a while, I thought I had. Because I became so convinced that it's Medical IH when it could very well be Situational IH.

The way this came to me was when I saw on r/ELI5 "Why can we have sleep debt but not sleep surplus?" which I was like huh never thought about it. I did in fact guess the correct answer, but the way one ELI5 was worded particularly got me thinking.

Basically, your brain is a phone battery. When it gets low, it gives you a warning - fatigue, sleepiness, mental exhaustion. Then if it gets really low it slows down background applications and lags and can be buggy - you can't think straight, get a headache etc. Then when you recharge it to 100, it can't get any higher, thus no possibility for a "sleep surplus".

They go on with the metaphor by saying if you let the battery drain all the time, try to do complex tasks at 3%, run on 1% (stay up super late, bad sleep hygiene, pulling-all nighters, frequently getting just a few hours, insomnia) it can damage the battery. Sometimes irepairably, to the point it will never hit a full charge again. Sometimes you'll only be able to get a few hours of use before it drains again. It can struggle to turn off and on. I think you get the idea.

While I've actually used the metaphor myself to explain IH to others, I never got very deep to the point where I'd ask myself, "I can never charge my battery to 100 - why?" because it seemed, what with the unsolved nature of IH, there was no "why".

Obviously there has to be. If we keep the battery analogy, I kind of subconsciously assumed it was a phone that just had faulty wiring from the start - like a gene mutation causing IH. But instead, what if the phone is super old, and when you first used it, you abused the battery like crazy, then took it to a shop where a guy fixed it as best he could but after so long it just can't be brought back to the state it started in?

I'm unsure whether the "Situational not Medical" aspect of IH will change anything when it comes to my hope of ever waking up again. I've accepted that I haven't. In doing so, I've made the choice that my life isn't going to continue much longer.

But if you gave me an extra 10k/yr, I'd be less depressed. Situational Depression is treated by bettering the situation. But I don't know that I can correct the situation that may have caused my IH because it already happened.

However, when the situation is in the past, it's treated with therapy. I've been convinced for a while that I've gone as far as I can with therapy, but it's something I'm going to think about.

Thanks for reading if you did.

Stay Greater, Flamingos.

#ih #idiopathic hypersomnia #depression #mental illness #chronic illnesss #abuse tw

6 notes · View notes

theatricuddles · 1 year

Note

ok i have to know what happened with the ETS

So I decided to apply to graduate school kind of last-minute, which left me a month to get all my things in order, including a required GRE test score. For those unfamiliar, the GRE is the test required by some grad schools in order to apply in the United States. If you are familiar with the SAT or the ACT, it's like those. In fact, it's administered by the same company as the SAT: ETS, or Educational Testing Service. If you are unfamiliar with the SAT or ACT, they are tests that some colleges in the United States require to apply. If you're wondering why these tests exist, I have absolutely no idea.

I figured, since I usually test/memorize fairly well and did well on the SAT, I could just get my accommodations, cram for a week, and take the test (if you're wondering why I didn't wait until the last day possible, it's because as a safety measure, you can't just send electronic copies of your test scores or even have ETS send electronic copies of your test scores. You have to order your test scores and have ETS mail them to your intended school, which can take up to two weeks.)

So! I go to schedule my test and the scheduler says "Don't schedule your test until we have your accommodations, we can't give you accommodations after the deadline." I have a time-and-a-half testing accommodation, so I think "fair enough". I go to fill out their disability accommodation paperwork. It requires a previous school office of disability or a previous work office to sign off on it. I send it to my previous college's office of disability, who are very helpful, but also inform me that the paperwork requires a diagnosis that was given at some point in the last five years. (To be clear, that was not their fault, they just informed me of what ETS' paperwork was requesting).

My diagnosis paperwork was from high school, because I don't go in to get tested for ADHD every five years, because typically ADHD doesn't magically go away if it persists to adulthood. However, this meant that (according to ETS and, I cannot stress this enough, nowhere else) it was out of date. This means I cannot get my forms expedited, which means that the forms will take four weeks to process. Weeks that I do not have, because the scores from my test need to be in the admissions office of my graduate school in a month.

So I call ETS on the phone to find out if there's any way around this, given that I need to take the text within the next few weeks. They tell me no, there's no way around needing a diagnosis for a lifelong disability within the past five years to get my forms expedited, and also, it will still take a few weeks regardless of what I do. They are very unclear whether I can ask my psychologist, but when I explain that it is unlikely I will be able to see the doctor who diagnosed me as a child or find another doctor, because it takes a long while to be able to schedule a meeting with a doctor at this current time (this was post-2020), they give me three numbers of various medical schools to see if I could get diagnosed by a medical student doing a fellowship there. None of the numbers they gave me were accepting patients.

Finally, I speak to my psychologist about all this, who is able to rediagnose me as a physician. (He is also just as baffled by this as I am, but he gives me the forms.) Having officially gotten rediagnosed with ADHD, I call ETS' accommodation office again. The office informs me that regardless of what I do or what forms I submit, they can't guarantee it'll be done anywhere before four weeks out.

I give up and take the GRE without accommodations.

#Who said what #Stories #Long post /

2 notes · View notes

chiyoumen · 4 years

Text

Just so everyone knows, I'm still planning chapter 7 of Two Faced, but I need to replay the game because my ADHD ass forgot half the plot and little details I initially picked up on. 🤣 It just might be a while because of Nanowrimo prep and then Nanowrimo and also a full production YouTube video I have to direct, film, sing for, and edit. Also mental health stuff but that's a given... So I'm sorry, it's probably gonna be a bit.

#two faced #i mean that goes for mirror as well but i know people read more of tf #imsorrryyy #hopefully ill be able to focus better once i actually start treatment for this ngl #i mean i was just officially rediagnosed so #i can actually do something

1 note · View note

radicalposture · 4 years

Note

Hey, so were you diagnosed with autism/adhd as an adult? If you don't mind me asking, was that difficult to achieve? I'm 25, and I've often thought I might have adhd, but I've held off on looking into it because I hear it's extremely difficult and expensive to get it tested and diagnosed as an adult.

yes I only got diagnosed last october, I was 25 then too! it was kind of a weird journey for me, all of my siblings and my dad got diagnosed with autism or adhd one after the other and I was still saying “but I can’t really be autistic/adhd” right up until I actually got diagnosed lol. but since then my whole life suddenly makes sense for the first time and I really think things are gonna be ok! this applies to autism/adhd/other neurodiverse stuff but autism and adhd is what I know, but I hope it applies broadly as well

so unfortunately yes, it can be pretty expensive to get through the whole process. depends on where you live of course, I live in Ireland so even though we do have public healthcare I would probably have been on a waiting list for upwards of two years to see a terrible psychologist who didn’t know anything about adhd/autism so I went to a private psychologist. I already knew her pretty well bc my siblings had been to her and I knew she knew what she was talking about and I felt comfortable with her. seeing her cost me around €900 which is definitely a lot, different psychologists have different rates but the price can go up depending on what tests u get done. the more tests you do the more expensive it will be as a general rule (at the same time I saw a different psychologist who had a lower flat rate so idk what the “rules” are about this tbh) I got a standard assessment as well as autism and adhd tests which is why it was so expensive. it used up pretty much all my savings lmao but after getting a diagnosis I was able to apply for disability allowance (which was a hellish process) and I got rejected and had to appeal the decision but I got it in the end, which is fortunate bc I quit my job lol.

recently I wanted to look into medication so I had to go to a psychiatrist because you can’t get a prescription for stimulant medication from a gp in most countries I think? BUT he’d only see me if I got rediagnosed by his psychologist, so that was another €300 for each of them. I did get prescribed ritalin in the end but I’ll have to get the prescription refilled a few times a year bc it’s a restricted medication, which will mean paying €100 ish for each time I do. fortunately I don’t actually have to pay for the medication itself bc I have a medical card.

so yes, it can be expensive! all told it’s cost me almost €2000 to get it all sorted and will keep costing me maybe €300 a year from now on, so it’s definitely something you have to budget for. especially depending on where you live, I imagine things are v different from country to country. also I’m very fortunate bc I still live with my family so I’m free of some financial pressure and I’d been saving for it for a while but I know how hard it is to countenance paying out that kind of money, and wondering whether it’s worth it.

as to whether it’s difficult to achieve I think you’ve got to break it down because official diagnosis is only part of it. so if you think you do have ADHD I’d look at it from a couple of different angles:

1. self acceptance/understanding is absolutely the most important thing. I know people who’ve never been to a psych who know they’re autistic/adhd and really flourish, I also know people who have official diagnoses but who won’t accept it themselves and reject help/support and they’re making things so hard for themselves. so the most important thing is to educate yourself about what adhd means and, more importantly, what it means for you. everyone’s brain is different and understanding exactly how your brain works and why you think/behave the way you do is the most important thing you can do. there are a lot of resources out there, especially online, - I’ll put a link to a google drive of books and things I have at the bottom - and it can be good to connect with others online as well. having people who Get It and can help you is really paramount, I know often our irl families/friends can sometimes let us down so sometimes the only support you can get is from following ppl on twitter or something. the adhd subreddit is weirdly helpful and supportive, it’s great to be able to throw out a question like “I think like this am I insane y/n” and have other people go “nah ur fine” it’s very validating (also validation/external perspectives is super important for adhd bc we can be extremely bad at self assessment). so yes, the most important thing is firstly to know thyself by 1) educating yourself and 2) listening/connecting with others like u.

2. is it important to have an “official” diagnosis? no and yes. obviously you don’t need a diagnosis from a doctor to know what you are, and 70% of the things needed to help you flourish are going to come from your own research and the support systems you make. and if you cant afford or access a psychologist or psychiatrist it doesn’t make it any less real or bar you from educating yourself/accessing resources etc. HOWEVER. if you can get a good diagnosis then I really would go for it, bc: 1) it opens a LOT of doors to official resources, whether that’s access to welfare, supports and accommodations at school or college, medication, etc etc. a lot of the time the supports we need are behind this diagnostic paywall, which sucks but it is what it is :/ so that’s one consideration. 2) it can be really validating and help set your mind at ease about whether you “really” have adhd or if you’re “faking”. like I said I didn’t believe that I was “allowed” to be autistic before I got diagnosed. I also didn’t consider that I might have adhd, I went in thinking I’d just get the autism diagnosis so it wasn’t something I would have found out on my own probably. so it can be good to get an outside opinion, especially as, like I said, we can be really bad at self assessment. 3) it feels good to know you have a piece of paper to throw at rude family members/teachers/doctors who don’t believe it’s real 4) if you can find a good psychiatrist/psychologist it can be such a good thing to have that support and to get genuinely good advice from a professional you trust. doesn’t always happen but if u can find one it’s a godsend

wow this got long. to summarise, if you think you have adhd or anything else I would

research and educate yourself. for adhd probably the best thing to do is read driven to distraction and delivered from distraction, written by two psychiatrists who are adhd themselves. they’re both in this google drive along with loads of other resources I’ve collected, there’s also books about autism as well. as a disclaimer not everything/everyone here has my 100% endorsement some of it is there for academic/historical interest or only parts are helpful but by and large it’s useful. also watch this video and feel Seen

look for a good psychologist/psychiatrist if you’re going for a diagnosis. see if there’s an adhd organisation in your country/area and if they can recommend anyone. a lot of the time you’re better going to a child/educational psychologist who’ll see adult clients as they tend to Get It more. do look for someone who is clear about having experience in adult adhd bc unfortunately even qualified psychologists get a LOT wrong so make sure you get someone who knows what they’re doing before you give them your money

yes it can be really expensive. but if you’re needing to access things like medication or welfare I think it’s well worth the trouble and the money. my sister got diagnosed in her second year of college and was able to save her degree bc of extensions on projects and things like that (I didn’t get diagnosed until after college and spent four years torturing myself I WISH I had known) and it can be something that’s better done sooner rather than later. So if it’s something you can do without putting yourself in financial danger I think it’s good to bite the bullet and go for it. like I used up basically all my savings BUT I now can access disability payments and medication so it was worth it for me. it’ll be different for everyone so use your judgement obviously

anyway hope this helped! let me know if you need anything else! and good luck on your journey

#brain tag

10 notes · View notes