#undiagnosed illness

[opalsiren]

being undiagnosed some days is like. it's cool it's fine it's chill. diagnosis does not necessarily mean cure, even if i do get a diagnosis it doesn't mean i will get access to effective treatment, diagnosis or no i am valid etc. but then other days on all levels except physical i am standing outside my doctor's house banging pots and pans together screaming 'what is wrong with me!!!!!!!!!!!'

#.txt #spoonie #disabled #disability #chronic illness #actually chronically ill #undiagnosed #undiagnosed illness #undiagnosed chronic illness

[wishful-seeker]

There is something really wrong with me. Like REALLY wrong.

#chronic illness #physical illness #undiagnosed illness

[enasallavellan]

So, getting my gastric swallow test. About every outcome will drastically change my life and make way harder than it already is. Think happy thoughts and pray it's some weird thing that'll just clear up after awhile. I can't deal with another chronic issue, between bipolar disorder and ADHD, life is hard enough already.

#lacy explains it all #undiagnosed illness #things dont look good guys

[spottyissleepy]

Sorry to keep ranting but like. Days like these really hit so hard

I feel like I need to grieve. For a life I know that I can’t have anymore. Because I woke up with the flu one morning and my entire life was changed, probably forever. I want to grieve. I need to grieve for it, because it’s a life I no longer have. But there’s so many things that keep giving me false hope, that keep telling me “you’ll get better, you Have to get better” and I don’t.

I just don’t know anymore

If anyone who has chronic illness that’s been in a similar sounding position.. I would. Really appreciate just some general words of… comfort I guess? I don’t expect anything of strangers, as it’s obviously not your job, but it anyone’s willing. I’d really appreciate it.

#spotty speaks #tw vent #chronic illness #chronic problems #chronic pain #undiagnosed something #undiagnosed chronic illness #undiagnosed illness #undiagnosed chronic pain

[tumble-tv]

"kill them with kindness" WRONG run them over in your wheelchair 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽

#wheelchair #ambulatory wheelchair user #ambulatory mobility aid user #chronic illness #chronicpain #chronic disability #other chronic illness bs #chronic disease #chronically ill #disabled #fibromyalgia #undiagnosed chronic illness #disablity #chronic disorder #chronic pain #chronic fatigue #invisible illness #invisible disability #disability #physically disabled #disabilties #cpunk #cripple life #cripple problems #cripple punk #queer cripple #crip punk #undiagnosed chronic pain #joint pain #screenreader unfriendly

[matchboxcowboy]

Dear chronic nausea community,

Anyone have any advice for coping with severe or moderate nausea at school? I can’t think of anything, and neither can the school workers. I’m open to anything.

Wishing you low nausea, and helpful doctors as always.

#chronic nausea #chronic illness #chronically ill #spoonies #undiagnosed illness

[dr0wzytraz0done]

I have a neurology appointment Thursday. This will be fun (extreme sarcasm)

#neuro #neurology #chronic illness #undiagnosed illness #doctors

[kolibri-herz]

I was supposed to go to a ren fair tomorrow. But we have an extreme heat wave this weekend and heat makes me feel horrible, so I won't be able to do all the walking and standing of a fair. And it hurts so much. I feel so lonely, not because I don't have friends, but because my body and my needs often keep me from going out. I don't wanna spend another weekend alone inside, but there's not much air conditioned spaces here so I don't know what else to do. I feel so betrayed by my body.

#actually autistic #chronically ill #lonely #undiagnosed illness #sensory overload #feeling the heat and sun makes me wanna scream and tear my skin off #personal

[inkskinned]

they want to talk about mental illness and acceptance and how everyone is a little ocd it's cute and quirky and their "intrusive thoughts" are about cutting their hair off and you say yours are about taking a razorblade to your eye and they say ew can you not and everyone is a little adhd sometimes! except if you're late it's a personality flaw and it's because you are careless and cruel (and someone else with adhd mentions they can be on time, so why can't you?) and it's not an eating disorder if it's girl dinner! it's not mania if it's girl math! what do you mean you blew all of your savings on nonrefundable plane tickets for a plane you didn't even end up taking. what do you mean that you are afraid of eating. get over it. they roll their little lips up into a sneer. can you not, like, trauma dump?

they love it on them they like to wear pieces of your suffering like jewels so that it hangs off their tongue in rapiers. they are allowed to arm-chair diagnose and cherrypick their poisons but you can't ever miss too many showers because that's, like, "fuckken gross?" so anyone mean is a narcissist. so anyone with visual tics is clearly faking it and is so cringe. but they get to scream and hit customer service employees because well, i got overwhelmed.

you keep seeing these posts about how people pleasers are "inherently manipulative" and how it's totally unfair behavior. but you are a people pleaser, you have an ingrained fawn response. in the comments, you have typed and deleted the words just because it is technically true does not make it an empathetic or kind reading of the reaction about one million times. it is technically accurate, after all. you think of catholic guilt, how sometimes you feel bad when doing a good deed because the sense of pride you get from acting kind - that pride is a sin. the word "manipulation" is not without bias or stigma attached to it. many people with the fawn response are direct victims of someone who was malignantly manipulative. calling the victims manipulative too is an unfair and unkind reading of the situation. it would be better and more empathetic to say it is safety-seeking or connection-seeking behavior. yes, it can be toxic. no, in general it is not intended to be toxic. there is no reason to make mentally ill people feel worse for what we undergo.

you type why is everyone so quick to turn on someone showing clear signs of trauma but you already know the fucking answer, so what's the point of bothering. you kind of hate those this is what anxiety looks like! infographics because at this point you're so good at white-knuckling through a severe panic attack that people just think you're stoic. even people who know the situation sometimes comment you just don't seem depressed. and you're not a 9 year old white kid so there's no way you're on the spectrum, you're not obsessed with trains and you were never a good mathematician. okay then.

mental illness is trending. in 2012 tumblr said don't romanticize our symptoms but to be fair tiktok didn't exist yet. there's these series of videos where someone pretends to be "the most boring person on earth" and is just being a normal fucking person, which makes your skin crawl, because that probably means you are boring. your friend reads aloud a profile from tinder - no depressed bitches i fucking hate that mental illness crap. your father says that medication never actually works.

you still haven't told your grandmother that you're in therapy. despite everything (and the fact it's helping): you just don't want her to see you differently.

#writeblr #warm up #to be clear let me state again: i think you should id however you fucking want if it helps you seek peace #but there is a HUGE difference between being like '.... im undiagnosed but i think i might be X' #and a person who is like ''omg my intrusive thoughts made me buy a birkin!!!'' #babe mine made me throw up bc they disgusted me so much <3 #mine made me hurt myself evenly. even when i wanted to stop. i have had to put my hand on the stove MULTIPLE TIMES #and again i'd rather have 10000 people get help for something they don't need help for #than have 1 kid NOT get help #but there has GOTTTTT to be a middle ground here #bc at this point it isn't ''raising awareness'' #it's . fucking misinformation. and ''what this picture says about you!!!!!'' #& yes! im mostly talkin about ppl who are actually disgusted and offended by signs of mental illness #but use it to defend THEIR actions #like babe you hate when kids start yelling in the walmart? but you YOuRSELF can yell? #you are depressed so it's fine you were cruel to your spouse? #but if your spouse spends too much time in bed she's a lazy fuck? #your partner needs to do everything for you bc of your history in trauma? but when SHE has needs she's being clingy and gross? #HUGE difference here between whom i think most of my followers are btw. like #all it takes is fucking anyyyy empathy or kindness . like. #anyway it's hard to explain im hoping we all know the person im talking about lol

[chronicsymptomsyndrome]

I know its kind of silly to say “don’t feel bad for canceling because of pain, fatigue, etc” because I know guilt is a reflex you can’t easily refrain from. But you can reason with yourself so instead I’ll say this:

Nobody can feel what you’re feeling but you. Nobody knows the severity of what you would be putting yourself though if you were to “tough it out.”

If you do “tough it out,” the purpose for you doing the thing will most likely not be fulfilled anyway. You probably will not be mentally present or engaged. You probably will not have a good time or get much out of it. Etc.

If people really have such a problem with it, thats a huge red flag. Being transparent about your needs and boundaries is a great way to weed people like that out of your life.

If you have any kind of chronic illness or disability, remember that you probably have a very warped judgement of what is “reasonable” to endure in terms of pain, fatigue, burnout, etc.

You didn’t ask for this, you don’t deserve this, there is no reason you should have to bear the weight of it alone. I bet if someone else was in your position, you wouldn’t mind helping accommodate for them?

Low energy days are truly sacred, take them seriously. Please respect your body’s signals. “If you do not choose times to rest, your body will choose for you” or however the saying goes

It is so much pressure to have to deliberate what sacrifices are necessary for proper self care. Give yourself extra credit for having to deal with that stress on top of whatever is putting you in that position in the first place. Thats a lot at once

You are leading by example and showing others that you would never expect them to hurt or overextend themselves for your benefit. Putting yourself first always inspires other to do the same.

Please be proud of yourself for even considering canceling and putting your needs first. That is so strong of you <3

#rants & reflections #chronic pain rant #chronic pain #disability advocacy #disability community #disabled community #disability rights #chronic illness vent #undiagnosed chronic illness #chronic illness community #chronic illness rant #chronic illness #chronic pain problems #undiagnosed chronic pain #fibromyalgia #dysautonomia #spoonies #physical disability #chronic fatigue #ehlers danlos syndrome #pots #postural orthostatic tachycardia syndrome #craniocervical instability #migraine #cluster headaches #tmd #heds #neck pain #back pain #chronic headaches

[eddieelliotmunson]

Stuff I didn't think would bother me about disability progression, but does:

My skin.

I'm getting acne and weird dry spots on my face and shoulders and everywhere, and stretch marks everywhere else. And my hair is a disaster--I finally gave myself a buzzcut so I wouldn't have to look at greasy hair all the time, but I did it terribly, and it's ridiculously uneven

I know why my skin is getting bad--I have no energy to stand at the sink and wash my face, I can't shower without so much fatigue that I can barely handle it, my depression meds made me gain weight (which I might actually lose again because something is causing me to lose my appetite and get really nauseous when I consume anything but water, applesauce, and pudding cups).

But it still hurts. I feel like even if I'm using a cane or my crutches in public, or maybe even a wheelchair someday, as long as I'm not in pajamas or sweats and my skin/hair looks good than people won't be disgusted by me. But instead I look visible disabled most of the time, and that's scary. Especially because I don't know what's going to come next--am I eventually going to have to get a feeding tube, if this nausea and loss of appetite stays? Or if there's something wrong with my kidneys, like my doctor worries about, will I have to get a dialysis port?

I now have dietary restrictions (even though that doesn't really matter right now)--I have to eat GERD-safe stuff, because that's what they think the nausea is coming from. There's a lot of stuff that can make my acid reflux flare up, including a lot of my favorite foods.

There's something about being visibly disabled that just hits me. I can't pretend anymore. I can't pretend to be fine to strangers, or my mom's church, or my friends. I can't pretend to keep up with them and be on the same life path.

It's scary how much worse my health has gotten in the last couple weeks.

#chronic illness #undiagnosed illness #spoonie #spooniestrong #disabled #disability #physically disabled

[bardic-inspo]

*takes your face and holds it tenderly*

You were not made just to suffer. You are more. You are so much more than your hardest moments. 💜

#the undiagnosed probably endo got me real fucking sad today #we are more than our pain and suffering #chronic illness #mental health #self love #self care #recovery

[painfordays]

I need need NEED ablebodied people to stop bringing up deconditioning (especially in an accusatory tone) every time a disabled person talks about being unable to move much unless they're willing to do the fucking daily PT exercises with us at home. Or is that too much of an inconvenience? Hm?

#actually disabled #chronic illness #chronic pain #undiagnosed chronic pain #chronic fatigue #undiagnosed disability

[melodymorningdew]

Imposter syndrome is a bench

Image description: drawing of a nondescript person with a tired/unimpressed expression on their face right next to a drawing of someone vibrating with excitement

Caption:

Me: "I must be faking my illness. I went on a walk yesterday."

Also me: "MY WALKER AND SHOWER CHAIR ARE ON THEIR WAY"

#chronic illness memes #disabled memes #dysautonomia memes #chronically ill memes #imposter syndrome #disabled #chronic illness #chronically ill #chronic pain #chronic disability #melody morningdew #chronically fatigued #fibromyalgia #undiagnosed chronic pain #undiagnosed chronic illness #chronic migraines #chronic fatigue #hypermobile ehlers danlos #ehlers danlos awareness #postural orthostatic tachycardia syndrome #tachycardiac #tachycardia #pots #dysautonomia #undiagnosed something #undiagnosed disability #invisible disability #invisible illness #disabilties #mobility aid user

[spottyissleepy]

Legitimate question for other disabled people:

How do you cope with the knowledge that your caregivers might resent you? Maybe not you as a person, but you for your disability and dependence on them?

My eyes have been opened to a lot of newfound realizations recently, and this has been one of them… but I don’t have the funds to leave, and I can’t exactly discuss this with them. So.. how do you cope ?

#newly disabled #disabled #disability #physically disabled #disabled artist #disability pride month #(I know it’s not anymore but. I really need the advice) #caretaker #toxic parents #toxic household #toxic home #advice needed #advice wanted #chronically ill #undiagnosed chronic pain #undiagnosed illness #undiagnosed chronic illness #undiagnosed something #undiagnosed physical illness

[whatshouldwecallchronicillness]

Feeling sad about normal test results.

They say: It’s like you want to be sick.

Me: No I AM sick. I want to know why.  

#Chronic Illness #spoonie #chronic pain #chronic fatigue #undiagnosed