chronically ill/physically disabled people, how do you deal with doctors appointments? what do you say/do to advocate for yourself? im autistic and not diagnosed with a chronic illness yet and i really struggle to know what to say to get them to listen to me and understand so that i can get the help and care i need. even if i bring someone with me, they also need to know what to say and i don't know anyone who understands well enough to explain to the doctor for me, which means that i have to tell them what to say before going. but that's the problem since i just don't know.

i have chronic joint pain that ive had for years but has only gotten worse over time. i also have hypermobile knees which are the worse they've ever been right now. i'm chronically fatigued and barely have the energy to eat and do basic hygiene. i have a few friends that i talk to fairly regularly and im very thankful for them but i still struggle so much with maintaining a social life when i cant even maintain my own physical wellbeing. i only go outside when i absolutely have to/when my pain is low enough and i have enough energy. on average i probably leave my house about once or twice a week, usually to go to medical appointments, to an internship i have once a week or to go grocery shopping. i usually try to do both at the same time if i can (like going grocery shopping after my internship) but most of the time i have to ask my parents to get me groceries since i dont have enough energy to. all i want is to be able to go outside just to take short walks and enjoy nature and the fresh air but i can't do so without the right treatment/a mobility aid. everything im doing right now is bordering the line of too much. im constantly tired and overwhelmed and everything feels like a struggle, even the smallest tasks most people do everyday without thinking twice about it.

i have almost only had bad experiences with doctors and other medical professionals like physiotherapists, which has given me a lot of extra anxiety on top of my already pretty bad social anxiety. i really struggle to make appointments and even more so to go to them, and when i bring myself to do so i really struggle to express myself and explain how i feel and how i want them to help me. i almost always get shut down and offered no actual help with any of my problems. i just don't know what to do anymore.

if anyone has any advice i'd really appreciate it. i know that i can't give up because my life right now without accommodations is too miserable, but i also don't know how to move forward.

sorry if this was hard to understand. i really tried my best to explain but im having a bit of a hard time expressing myself right now due to feeling worse than usual.

when a disability fucks up one year (without accounting for the lost years because of degrading health) of your life before you can even get a diagnosis and that for that year "you're not disabled enough"

once again No diagnosis ≠ No symptoms/illness/disability/...

ableism is being told "it's good to see you on your feet" by family members as you're forced to walk because your wheelchair didnt fit through the door

ableism is being scared about having a carer for the first time, but every internet search for what it's like are "what it's really like to be a carer" articles that paint disabled people as invalids without a say or entitled dickheads hurting nurses

ableism is being told "have you tried yoga?" "my friend said the alkaline diet cured her fibromyalgia" "of course you're in pain, you don't do any exercise"

ableism is that fucking marathon analogy. "if i want to run a marathon I have to train - at first one mile will hurt me, but eventually it'll be a breeze" grit your teeth through the pain, it'll get better.

what about when it hurts to type on your phonescreen? or it takes you 5 minutes to crawl to the bathroom? how long do I have to endure these things everyday before they get easy? it's been a year

ableism is telling your doctor over and over you can still move your legs, there is no nerve damage or loss of mobility, it just hurts so much you can't bear to move. and finding "possible nerve damage and loss of mobility" on every. single. file.

and this bullshit ignorance has come from not just family, but trained professionals - physiotherapists, occupational therapists, general practitioners, and neurologists

LISTEN TO ME, listen to us, please listen! stop talking, stop suggesting, just fucking listen

do this for your physically disabled friends because i promise you they aren't getting that from anyone else

as if the pain isn't exhausting enough, being constantly ignored, talked over, and misunderstood is torture

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?

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"

i want to scrub all of my joints with steel wool and replace my cartilage with hot glue in hopes that maybe that will ease my pain for once in my life

please don’t scroll; I really need your help to reach my gofundme goal of $3500 and not become homeless.

Im Elle, a queer, ace, disabled person with ADHD, depression, and two cats. In November, I lost my job without warning. I have no savings as the job already had me living to the last dollar of every paycheck. I was denied unemployment and food stamps. I cannot work away from home, a physical job, or something with strict hours due to some yet-to-be-diagnosed illness.

this is my story — what’s going on & how I got here. (Smaller text used because it’s a lot of information/a long post.)

In early 2018, I was doing regular walk/runs. In 2019, I stopped being able to run, so I went on walks. Running took hours, then days, to recover from. My body couldn’t produce energy to do it consistently, so, walks. In 2020, I kept going on walks and tried to do aerobics. I was not able to keep doing aerobics. My body took hours upon hours to recover, where before it hadn’t, I was alone for almost all of 2020, and never developed COVID symptoms; it was what happened with running all over again. In 2021, it started to take more time to recover from walks. Then I started to need to take a nap immediately after I clocked out from work— and it was a work from home job. In 2022, I began to go from my sitting desk job straight to my bed most days, laying down exhausted right after work, even sleeping through lunch to get some rest.

On New Year's Eve 2023, I spent 30 minutes cleaning, including vacuuming my living room. I had to rest the rest of the day.

In the last five years, I've gone from running to being exhausted for hours by taking my garbage to the curb.

Imagine you were someone who enjoyed recreational exercise. Now imagine doing 1/100th of that and feeling sick for days. Thats me.

There are other symptoms also. More vulnerability to infection and more trouble fighting infection. Shooting, sharp muscle pains in large muscles such as the thigh or forearm, like a pinched nerve, that come and go at random. Pulse rate that skyrockets upon standing, to go back to normal soon after. Stomach inflammation. Inflammation without major swelling. Headaches. Complete inability to tolerate heat, leading to excruciating migraines that only go away with things like cold showers, electrolytes, and hours of rest in the dark with ice. Muscles that literally don't feel like they're getting oxygen. Random rashes. Face flushing. Being much more easily out of breath, yawning over and over, like I can't get air correctly. Weight gain, no matter what I eat or don't eat.

And just being so, so tired.

In summer of 2018, something… stopped working in my body. I felt sick all the time. I had a low, unexplainable fever nearly every day. Shooting nerve pain would wake me up at night. The doctor said I had a cold. But months went by and I didn’t get better. When my blood work and thyroid hormone level was normal, I was referred to a rheumatologist.

I was diagnosed with fibromyalgia after he made me wait 45 minutes, came in and asked “are you tired?", poked me hard, said I was tender, and left without running tests. This sort of “uhm the standard blood work came back normal, have you tried exercising more? I know you’re here because your body can’t recover from it but have you tried more of that? Also going to sleep at night?” has been the response over and over and over for five years. It got to the point where I even started to wonder if I was somehow making it up. I see a psych nurse. She thinks there's more than just depression, ADHD, and other things - though we both agree that managing those is vital too. She used to be a cardiologist, so this is reassuring. But when I have tried to see other doctors, it goes differently. Most of the time they see I have ADHD, a long history of depression, and hypermobile joints, and say that explains everything. I can't count how many times I've been told "well, you have depression” when the labs, if they even agreed to run them, came back normal. My standard blood work sometimes comes back with anemia, but I take an iron supplement. No improvement had come of it. I’ve had my thyroid hormone levels tested over and over, but never the antibodies. No imaging or referrals have happened, outside of one to a second rheumatologist. He ran no tests either; he just saw my joints are hypermobile and I was “sure taking a lot of mental health medications” (two at the time), and… that was that.

I had given up on actually even getting help until my SIL recommended a doctor she knew. For the first time in five years, when the standard blood work and TSH tests were normal, she told me we would keep looking. I actually cried with relief at that. It’s amazing to be believed after all this time.

Because of …. All of this, I'm trying to figure out how to either work for myself or find a work from home job that has flexible hours I can choose. I literally wouldn't be able to work a retail gig where I have to stand for eight hours, or even a 9-5 where I have to be there for those exact hours, because my body cannot do that right now. I want to get better but it's a long way off. First I need to know what's even wrong. I'm praying for a diagnosis soon. And treatment. At the least, management.

I have heard of EDS and I have been evaluated. I apparently don’t meet enough criteria, hence the diagnosis of JHS instead. It’s in the same family. I have also heard of POTS. I am pursuing testing. Same with Chronic Fatigue Syndrome, MCAS, fibromyalgia… yeah. The thing is nothing outside of the standard blood count and thyroid hormone level test, no other lab tests have been done. There are so many things this could be that have never been checked. Lyme disease, for example, is extremely common where I live (it’s actually just extremely common worldwide) and matches much of my experience, but 1) in the USA the initial Lyme test relies on a strain of bacteria cultured in the 80s 2) there are over 100 strains of Lyme disease in the USA 3) in spite of decades of research there are doctors who don’t believe chronic Lyme exists 4) no doctor has ever checked and I only recently learned anything about it so I never asked. But… there are a lot of things to check that I’ve never had checked is my point. Fingers crossed someone can help me get there.

I do not have a partner who can try to support me through this, and my family already supports me however they can. My severance (which was low as I found out I was being paid much less than the rest of the team later) paid only my January rent.

Since my ability to work is severely limited right now, and I've been denied unemployment and food stamps, and I would need a diagnosis and to be awarded disability benefits in court (which can take YEARS that I don’t have), I have nothing in savings because of years of underpaying jobs the cost of living and being disabled and going through prior periods of unemployment due to this and other factors, I am left in a tough spot without help. Without this help, this gofundme... I have nothing.

So... here I am. A queer nonbinary disabled neurodivergent writer, trying my best, living with some undiagnosed illness that's severely impacted my ability to function, who got fired without real reasons (in America they can just do that to you without even telling you why), asking for your help to pay my February rent and January bills so I don’t repeat the trauma of being homeless. Or for you to reblog this.

Thank you for reading all of this.

It’s been on my chest for a long time. Even if it wasn’t for the gofundme, it feels good to talk about and be honest about my health. It reminds me you’re not supposed to feel like this all the time when I tell other people and they tell me I should get help and deserve answers. It’s reassuring to see competent doctors who finally believe me. I hope we figure it out.

no donation is too small— they add up. If just 100 people gave $35, the goal would be met. Sharing is also giving— it means someone who can help is more likely to see it.

You can also help via my venmo — secretladyspider

CashApp — secretladyspider

or find PayPal in my tip jar in my linktree

Goal is $3500 or over. Funds needed ASAP. If it goes over, that’ll help with February.

Thank you for anything and everything.

✨ A reminder! The holidays are not a happy time for everyone! ✨

please, don’t expect me to “be happy” just because it’s christmas

everyone’s dealing with things that they may not be open about, such as grief, eating disorders, depression, chronic illness, financial instability, etc.

you don’t owe anyone your happiness, and your certainly don’t owe anyone your energy!

take care of yourself this holiday season 💗🎄

fuck medical gaslighting all my homies hate medical gaslighting

Can you guess how i'm feeling right now

shoutout to the confused chronics

shoutout to the people with chronic fatigue who have no apparent reason for being so tired

shoutout to the chronically ill people who feel like they can't use that term because they don't know what's wrong with them

shoutout to the people with chronic pain who only have diagnoses of the mental kind

shoutout to everyone afraid to use the word chronic even though they suffer every day

-

I'm mentally ill, neurodivergent, and have ibs.

my mother has fibromyalgia, arthritis, carpal tunnel, bursitis, insomnia, and probably more.

I find myself comparing myself to her all the time, thinking things like "my pain isn't that bad," or "at least I don't have fibro," or "I'm just being lazy." I hesitate to take pain meds because I feel like I don't "deserve" it.

comparing pain in this way is an awful practice. it prevents people from getting the treatment and validity they need.

no, I don't suffer the way she does. but I still suffer.

I have back pain daily. I regularly have to do physical activity which makes it significantly worse. I have a shitty mattress that gives me no relief.

when I have to lift heavy things or sleep wrong I sometimes get pain all the way from my neck to my knuckles.

I get joint pain especially in my knees and ankles when I walk too much or when the weather is bad.

I get unpredictable nausea and have to be constantly vigilant about hydration, staying cool, and trash bags even when I am out in public.

I have chronic fatigue that I can't explain other than the ibs and mental health, so I hesitate to use it. but that's what I have. no matter how much I sleep, I am exhausted. it's hard to get out of bed and when I walk it feels like my limbs are filled with lead. in school I struggled to stay awake in class sometimes.

sometimes I have trouble talking. it can be because I'm feeling nonverbal, because my anxiety overwhelms me, or because my nausea or fatigue get so bad it's literally difficult to use my voice. it takes too much energy.

my ibs is a nightmare. stress makes it worse, and then I stress over the ibs, which turns into a vicious cycle. I missed a job interview because of this. I will probably never have a 9 to 5 job because of this.

I am 24. I should not be feeling like this. but I do. I am.

so yeah. shoutout to the chronic people who feel like they don't deserve to use that word. whatever your problems are, even if - especially if - you aren't diagnosed with anything: I promise you, you do.

you deserve validation. you deserve an explanation. you deserve relief.

I cannot fight for my health and fight the world at the same f**king time.

Trying to figure out what mobility aid would be best for me. My legs are weak when my pain is bad, but I can't use a wheelchair since I'm on the second floor of my apartment (no elevator).

I'm trying to avoid a walker cause it would slow me down too much, so maybe forearm crutches? I'm not 100% sure if they're for leg weakness or not.

Any advice anyone has is greatly appreciated!

My friend, giving me a notebook as a gift: Look! It has bees on it!

Me, knowing that I'm slowly losing my ability to write/draw because of my chronic pain: I will cherish this for the rest of my life