#undiagnosed chronic illness

[tumble-tv]

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

[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"

[matchakuracat]

fuck medical gaslighting all my homies hate medical gaslighting

[chronicsymptomsyndrome]

That one trend but it’s one increment at a time bc rejection sensitivity dysmorphia has me scared of looking like an idiot with 4 notes ahaha

50 notes & I will

drink more water (easy since I drink like none ever)

regularly post lil hydration reminders

set a new goal

[wizario11]

TW: ableism

For all my non disabled people (and disabled people too)

If you think calling out that wheelchair user for moving their legs, calling out the person who uses a aac device for talking, the blind person for look at you when you talk, the mentally ill person for “not seeming mentally Ill”, etc

Guess what…

You just did some ableist behavior

There is no one way to act disabled, mentally Ill, chronically ill, neurodivergent, etc.

Disabilities fluctuate

Not everyone has the same symptoms

Fake claiming is not protecting "real disabled people"

It's harming us.

[scretladyspider]

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.

[flishthedragon]

Every time I see a "only physically disabled people can interact" post, I do a little "oh shit am I physically disabled? I mean I think POTS and chronic pain count but like am I physically disabled enough? My chronic pain isn't diagnosed does that matter? Will they get mad at me? I have things to say about this but maybe I shouldn't since I don't use mobility aids."

[jason-hates-grass]

It's so frustrating I don't know what's going on with me. I'm pretty sure it's Fibromyalgia, but I need to get other possibilities ruled out first. It's going to be hard to get to the rheumatologist since I'm out of sick days due to an injury at work.

I also feel like I need a cane or something on my bad days when my legs get weak, but idk if I really should since I haven't been diagnosed.

I'm also using disability tags even if I'm not diagnosed yet. Idk if I should do that either.

Thanks for reading. I'm just frustrated.

[dukedyke]

hey here's a poll!! i'm very curious about chronic illness and diagnosis so i made this poll. chronic illness however you define it. pls reblog this so it can reach more people for more results ty ty <3

[sundry-whovengerslocked]

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.

[tumble-tv]

The body isn't body-ing

[melodymorningdew]

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

[matchakuracat]

Being asked to rate your pain on a scale as someone who has had chronic pain for several years is so difficult. Like how am I supposed to rate the pain I am experiencing from 1-10 when I have no idea what it feels like to not be in pain. Like what is 0? what is 1?? what is even 10???? What am I comparing it to???? My 5 can be someone else's 10 and their 10 can be someone else's 2, and how is a doctor or anyone else for that matter supposed to tell the difference? Maybe it's because I'm autistic and I'm just overthinking it but it literally makes no sense to me.

[yrfemmehusband]

I have a doctor's appointment tomorrow and I'm thinking a lot about my own role in my medical treatment and how I've definitely aided in my own prolonged diagnosis. Yes, lots of doctors gaslight, and lots of doctors are starkly rude and unhelpful. But it's hard to deny I've also played a role in not getting what I need from appointments and Drs.

My severe medical trauma makes it really difficult to explain what exactly I want to say. It makes it hard to say anything. And while that's hard to overcome when you keep getting traumatized, it's something I really need to do. Not being able to fully articulate to my doctors what's going on with me has severely negatively impacted my care.

It is also up to the patient to redirect their care if it isn't going in the direction they feel it needs to go. I have known this whole time I need to go up a neurologist but on some level I have allowed myself to be yanked from specialist to specialist to not find anything wrong. Investigating issues that might be a problem but don't fit all my symptoms, especially the most important ones. I should have emphasized which symptoms were affecting me most and I should have displayed more of my knowledge about where I think their origin could be.

All of this was hard to do for multiple reasons. These things have been more or less out of my control, it was hard to recognize what I needed to do. Part of the issue is fear of doctors and the medical system as a whole. Listing off all of my symptoms is difficult because they are so widespread. Ive had so many gaslight me that it's easier to pick a few most impactful symptoms and leave out the rest.

Another reason is because of my illness itself. Doing anything has been extremely difficult for two years now. It's hard to make art, to post, to organize my symptoms let alone keep track of them. Ive wanted to make a folder of my symptoms, diagnoses, a timeline and pictures. I want to, just feel like it's not within my grasp to do it at all. It's difficult to pick up new habits or learn new things at home and at work. Everything is difficult for me. Add medical trauma on top of this and I was nearly mute in so many of my doctors appointments. Even now it's simply hard to articulate everything and remember everything I want to say.

Honestly I don't blame myself, this isn't my fault. The medical system and doctors should put in more effort and safeguards for people who have issues articulating their issues, and a patient advocate did not help me either, it wasn't even his fault to be honest.

This time I'm setting aside time to write everything down. I already have a chart and timeline of my symptoms and diagnoses I made with my therapist and now I'm going to draft a script for my appointment tomorrow. Pls wish me luck and if anyone has any advice that is welcomed thanks if u read my rant lol

[wizario11]

Something I feel like isn't talked about enough is how much body image issues we face as disabled people.

I can't speak on anyone else's experience with this but for me it's hard to look at my self in the mirror when I feel like crap all the Time.

It's hard to know that you're beautiful when the standard is "just as long as you're not sick"

[crowcussion]

somebody kill me why does my body hate me, LIKE BRO, I AM FEEDING YOU, I AM SLIGHTLY TAKING CARE OF YOU, I AM KEEPING YOU ALIVE AND IN RETURN YOU GIVE ME, LET ME LIST THIS BULLSHIT

nausea

pain

acid reflux

joints popping out of place

eczema

weird ass allergies

sensory issues

chronic hiccups

insomnia

psychosis from insomnia sometimes

shit memory

passing out when i get up

way too much saliva

way too much mucus

sensitive ass skin

motor tics

difficulty breathing

numbness

i fucking hate my body