Me: I’m chronically ill which makes me disabled. I managed to adjust my life so I can live as comfortably as possible, which means I don’t work, being poor, and not doing much. Sometimes I have to sleep all day, sometimes I go on hikes with my dog, sometimes I exist, sometimes I want to kill myself. That’s my life and I’m okay with it.
Ppl: BbUuuTTt — ThAt soUndS dEpreSSinNngG!
Ppl: buTtT — I COulDn'TttT lIvE liKe thIsS!
Ppl: BbuUUTtTtT — iSn’T tHEre ANyThiNg THaT caNn bE DoNe tO chAnGe YOur depREssIng stAte?
Ppl: bUuuUtT — LivE iS abOUt LIVING, NOT EXISTING!
Ppl: buTT — hOw cAn yOu LIvee LikE tHat?
Ppl: buTttTTTTT — DoNt be So neGaTiVe, if IT wAsS mE, I WouLd bE mORe HopEFuLl, That thEre WiLL Be a CuRe, AND My dePreSsIng LIfesTyLe WoUlD eNd.
Ppl: BUttT — YOure SUCH AN INSPIRATION!!! I wOuLdvE kIlleD MYsElf By NoW!
Me: Well, at this point we should think about who is the really negative person in this conversation.
Ppl:
Ppl:
Ppl:
Ppl: Yeah, no, you’re negative, saying you’re disabled is negative, disability is okay in and of itself, but don’t call yourself disabled, because that’s so negative, not having goals and not accomplishing anything in life is a wasted life, contributing to society is important, you’re so poor for not seeing how you’re wasting your life, you should really try to change something, although I admire you, because I would have killed myself by now, just saying.
For starters, I’ve been having issues with my heart rate for over a year now. In the past, I’ve had problems with pericardial effusion and pleurisy a few times. My heart has almost failed twice within the past two years. I can’t remember exactly when, but I’ll say around…April of 2021? Is when my heart rate issues became worse. My resting heart rate is 76 - 88; usually, this is when I’m lying down or sitting for more than 20 minutes. When I sit up completely, my heart rate will go to 110 - 125 or 136. When I stand, it goes to the 140s or 160s. After showering, my heart rate hits 180 - 191. So far, the highest heart rate I’ve had is 198. My symptoms for the past few months has been stomach pain, brain fog, nausea, vomiting, headaches/migraines, dizziness, lightheadedness, random blurry vision that’ll last for up to 10 - 20 minutes, chest pain, shortness of breath, skin sensitivity, painful red patches on arms, leg swelling, painful/uncomfortable bloating, weakness, fatigue, a few fainting spells, and much more but I can’t remember them all at the moment. My current diagnoses are Lupus (SLE), Rheumatoid Arthritis, TMJ, and Raynaud’s syndrome.
Is anyone going through this or has gone through this? If so, what tests were run or recommended? Did you get a diagnosis?
I really need to know. I’ve been dealing with this for so long now. It’s interfering with my day-to-day life and daily activities. I can’t even talk or laugh without my heart rate going up to 126. The lightheadedness and dizzy spells are happening daily, and I’m afraid that I’ll pass out. The stomach issues I’ve been having have made it difficult and painful to eat and drink. It feels like my stomach is on fire 24/7 and being ripped open every once in a while. My doctors think I could have another possible autoimmune disease, either fibromyalgia or a connective tissue disorder (I dislocate almost daily). I’m not trying to self-diagnose myself, but I’ve been wondering if POTS could be another possible diagnosis? From what I’ve been able to research, the symptoms I’ve been experiencing are pretty similar, but I know Lupus can be the cause behind a lot as well. I also know that Lupus can be the cause of POTS. I just want to find out as much as I can to bring some things up to my doctors since they’re just as confused as I am, haha. I’m tired of dealing with this and need relief.
To the people who couldn’t get out of their bed today, I’m here for you…
To the people who skipped showering because they didn’t have the energy, I’m here for you…
To the people who cried in agony through their shower, I’m here for you…
To the people who suffer daily but no one believes them, I’m here for you…
To the people who feel like they’ve lost or are losing their youth to their medical issues, I’m here for you…
To the brave people fighting for their health every day, I’m here for you, I support you, I believe you. Your feelings are valid, you are loved, and I will stand behind you.
Good good, does this help to clarify? I think I figured out what was happening?
That makes sense, yeah. I just… It feels like there’s a war in the disabled community–visibly disabled versus invisibly disabled, able-bodied neurodivergent versus physically disabled, blind versus seeing but otherwise disabled, etc.
And I don’t just mean on tumblr or among kids. I was thrown out of a RL disability support group, average age 42, because “yeah but you look normal so you don’t need to be here.” That coming three days after I was asked to leave a public function in the town square because my medical equipment (a TENS unit clipped to my waistband and a cane) was “scaring the children present” and “you’re young and I don’t want to have to explain to them that young people can be cripples.”
So I am always super wary of people who respond to invisible disability stuff with “yeah but other disabilities…”
Wowwwww I’m so SO sorry to hear this, I had no idea. As I said, I’m fairly anti-social and i’m a hermit so I don’t really swim in many offline circles to begin with hahahahah. I definitely don’t blame you for being skeptical of that person’s comment under such circumstances. *hugs if wanted*
That said, I have paid dearly in my life for the knee-jerk need (mostly abled) adults have to insist that kids/youth don’t get sick or hurt or whatever. This erasure & denial leads to actual abuse of ppl like you and I and sooooo many others. I’m going to try to make public education about this issue a part of the mandate of the #InvisiblyDisabledPplExistmovement.
It’s time to make the INvisible VISIBLE by proudly and publicly talking about our experiences as invisibly disabled people.
Despite popular belief and community infrastructures, #InvisiblyDisabledPplExist. This ignorance and reduced community recognition and assistance can cause us lots of unnecessary difficulty, pain, and even death.
This means it’s time to start a movement to end the ignorance about what it “means” to be disabled.
Please use the hashtag #InvisiblyDisabledPplExist to not only make signs over disabled seating and other areas, as mentioned in tweet 4 above.
We must also talk about our many many stories of being invisibly disabled in a world where the public doesn’t recognize our existence (like mine).
Pls boost, post, take pics, and tweet your own disability awareness post-its!
Change starts with us
This is a nice effort for a good cause and all, but you’re also blocking information from people who can’t use their legs.
Ah I think I see what you mean, thanks for the constructive criticism. I think I actually did block info in the first photo and that’s not good, whoops - I’ll try not to do that in future.
But I have to say, blocking bus #s is harmful to us all, not just ppl who cannot use their legs. Also, I initially covered the bus #s for the picture so that I didn’t give away too much about where I lived, but then I forgot to move it off of the info so it’s not blocking it. The second image isn’t actually covering anything meaningful though - that I can recall anyway.
Regardless, this is a useful and good reminder for me & others in future. Thanks!
It’s time to make the INvisible VISIBLE by proudly and publicly talking about our experiences as invisibly disabled people.
Despite popular belief and community infrastructures, #InvisiblyDisabledPplExist. This ignorance and reduced community recognition and assistance can cause us lots of unnecessary difficulty, pain, and even death.
This means it’s time to start a movement to end the ignorance about what it “means” to be disabled.
Please use the hashtag #InvisiblyDisabledPplExist to not only make signs over disabled seating and other areas, as mentioned in tweet 4 above.
We must also talk about our many many stories of being invisibly disabled in a world where the public doesn’t recognize our existence (like mine).
Pls boost, post, take pics, and tweet your own disability awareness post-its!
Change starts with us
This is a nice effort for a good cause and all, but you’re also blocking information from people who can’t use their legs.
Ah I think I see what you mean, thanks for the constructive criticism. I think I actually did block info in the first photo and that’s not good, whoops - I’ll try not to do that in future.
But I have to say, blocking bus #s is harmful to us all, not just ppl who cannot use their legs. Also, I initially covered the bus #s for the picture so that I didn’t give away too much about where I lived, but then I forgot to move it off of the info so it’s not blocking it. The second image isn’t actually covering anything meaningful though - that I can recall anyway.
Regardless, this is a useful and good reminder for me & others in future. Thanks!
It’s time to make the INvisible VISIBLE by proudly and publicly talking about our experiences as invisibly disabled people.
Despite popular belief and community infrastructures, #InvisiblyDisabledPplExist. This ignorance and reduced community recognition and assistance can cause us lots of unnecessary difficulty, pain, and even death.
This means it’s time to start a movement to end the ignorance about what it “means” to be disabled.
Please use the hashtag #InvisiblyDisabledPplExist to not only make signs over disabled seating and other areas, as mentioned in tweet 4 above.
We must also talk about our many many stories of being invisibly disabled in a world where the public doesn’t recognize our existence (like mine).
I keep meaning to bring this back but I’m always too poor and am a terrible anti-social hermit. I’ve gotta get bigger post-its and better markers, which are surprisingly expensive. I also wanna contact my local news agencies about it as a movement I’d like to start (with their help), but I don’t wanna give away my real identity.
Does anyone have any suggestions on how I can make a bigger splash with this movement given these limitations???
That said, I’d also very much love it if others would help me by making a handful of these post-its and spreading them around too (especially on public transit).
ETA: Also, if you DO spread these post-its around, pls also take pictures of it and share those photos and perhaps also this link on any and all of your social media (e.g., facebook, instagram, twitter, tumblr, etc! using the hashtag!! PLS!!!)
“If you hear hoofbeats, think horses not zebras,” medical students are sonetimes told. In other words, symptoms probably don’t equate to a rare condition… unless they do, such as in the case of Ehlers-Danlos Syndrome. So Jan 31st is the Day of the Zebra!
Fittingly, I just got my knee MRI results - osteoarthritis is causing significant damage. (And they only scanned the worst one!) The first step is a round of physio, then possibly another referral. Stretchy EDS ligaments mean overuse of joints, they are hypermobile - unstable, wobbly, prone to subluxate or even dislocate! Mine are subluxing even with hinged braces on.
It’s painful, yes but thankfully not the constant, unbearable type but lots of discomfort with the occassional spike of brief agony when the joint pops out and goes back again.
I watched Morbius in the cinema yesterday and while I feel it was lacking in some places (post to come later) one thing I did truly enjoy was its portrayal of living with a disability. While I don’t suffer from the same illness that Milo and Michael did, I do live my life in pain the majority of the time and I understand where both characters’ motivations come from.
Milo – he says in the film that they have lived their entire lives under the shadow of death and that it is time for everyone else to experience that. My condition isn’t going to kill me, but I understand the desire to make everyone else feel what you feel; every nurse that has ever looked at me like I’m a hypochondriac, every person who has ever looked at my limp with a certain expression, and that one particular kid in the supermarket who laughed at me when I kept dropping things because my fingers weren’t working properly. These are the people who, when I’m feeling particularly low, I wish that I could make experience what I feel all the time, I wish that I could give them just some of my pain and make them understand. I get where he is coming from, before people start to claim that he’s demonising people with disabilities.
On top of that, the suddenly gained ability to do things that you could only ever have dreamed of spoke to me – my condition started when I was about 12 and it took a lot of things away from me that I enjoyed including dancing, trampolining, and even now when I’m trying to re-join groups, regain some of what I have lost it is painful to constantly be reminded that I have limits other people do not. If I was suddenly given something that could remove my pain, not only remove those limits but extend my abilities? I would take it. It’s painful having to watch other people do things you desperately want to do and if I got that chance, I do think that the overwhelming relief of being free would take away from any consequences and I do think that being able to exercise control over people who could have controlled me previously would be a heady experience. *
Michael – that said, the horror of hurting people, of being out of control is completely understandable. If the cure came at the cost of other people’s lives, would I continue as I was or undo the one thing that I’ve wanted for years? I understand why they couldn’t have Michael return to his state at the start of the film because they want him for sequels etc, but I do think that if his character arc was completed it would involve going back to how he was before and continuing to search for a more reasonable cure. And yet, watching him fight desperately to avoid returning to his previous state is incredibly relatable and I think could probably be compared to a drug addiction if anyone wanted to do anything with that metaphor.
In the two of them, I see the two sides of a potential reaction – the fight between ‘I suffered, now it is their turn to suffer’ and ‘I can’t let people suffer like I did.’ It is incredibly human, and I very much enjoyed how that was the main conflict of the film.
*NB – I do not condone murder under any circumstances, this is just a reflection on how I understand.
How it feels when you open up to someone about your health/disability and they don’t care or trivialise your pain and fears “oh you’ll be ok!”
I know you’re trying to help, that you think you’re comforting me, but sometimes I just need you to recognise that I’m hurting and comfort me or accept that it’s true. #criticalhit
I’ve been dealing with EDS, have had 2 surgeries in 1 year, have been trying to get through a class with post-concussion Syndrome, am trying to graduate, have been sexually asualted and been going through an investigation, and have been dealing with COVID-19 all in this pat year. I am struggling, but I can do this.
With my medical issues, I lost a lot of friends. It took me forever to find my people, but I found 3 girls who change my life. During this quarantine, I am missing them greatly, but I am reminded how lucky I am to have them. One of my best friends chats me every day and let’s me know she loves me. She even sends songs she’s listening to. Another friend FaceTimed me for an hour and a half last night. And today I got a package from my friend with a stuffed animal and a note.
My point is, it takes time to find your people, but when you do, they go above and beyond.
Are you a disabled kid between the ages 7-17 in the US? Do you know one you can pass this on to? I’m starting a project called “Portraits for Disabled Kids” Fill out the application here
My name is Michaela Oteri and I’m a 30 year old disabled artist who specializes in portraits. You can see my work at http://ogrefairy.com I am trying to give a solid and fun representation to disabled kids from all over the United States. If chosen you will also receive $50!
3 kids ages 7-12 and 3 kids ages 13-17 will be selected. Priority will be given to disabled Black, Indigenous, and kids of color. The portraits and audio from interviews will be posted on a stand alone website and will not be used for commercial purposes.
The application will close on April 15th so be sure to apply soon!
ID under read more
[ID: Two digital drawings. The first is a kid in t shirt and shorts. They have tan skin and brown hair and are holding a corn snake. Beside them are pillars with snakes and fire on top. Behind them are more pillars and flames. The second kid is white with brown short hair that is shaved on one side. They are wearing big comfy clothes. Their shirt is baby pink and has stars and moons on it. They are wearing a backpack that has a baby yoda sticking out. Behind them are threes with sloths hanging from them. On the ground are some ferrets and they are wearing matching ferret slippers.]
We feel like we have to project this image of disabled and chronically ill people being so brave. Like they’re such heroes because of everything they go through without complaining. And it’s true that we’re cool, but sometimes I’m sick of it. Sometimes I don’t want to be seen as someone brave or tough, even by myself. I cried for hours today because the pain just got so bad, and afterwards I found myself apologising to my family. Screw that. Why was that my first reaction? I want it to be okay for me to have days when I’ve had enough of it, to just cry and be sad and angry and frustrated because it’s not bloody fair. To not constantly worry that I’m a burden to everyone around me. Sure, I like making people smile, I think it’s good to be sunshine when you can’t find any, but I’m sick of insisting it’s not raining. I like to inspire people and do good where I can, but I am not your inspiration. That’s not my sole purpose. I didn’t choose this. I don’t owe it to anyone to turn this into some kind of origin story. Some days I just need to frickin survive and know it’s ok to not be ok and cry without apologising for it and be mad without feeling guilty because this is not my fault
