Invisible Illnesses & Disability Pride Month: Your Top Questions Answered

by Janet Jay
On a teal background with red shapes and a picture of two men holding a banner that reads "disability pride lead on!" Headline reads "Invisible illnesses and disability pride month: your top questions answered,janetjay .com. Photo from 2017 Disability Pride Parade and Resource Fair and the National Constitution Center and Dilworth Plaza, on Saturday, June 17, 2017. Taken by Bill. Z. Foster https://flic.kr/p/VKTGTm

Invisible illnesses are tough for a lot of reasons, one of which is never quite knowing where you belong. Too many people hear “disabled” and all that comes to mind is someone in a wheelchair who is paralyzed or has a visible disease that means they’re never going to walk again. It never occurs to them that 20% of the country, 50 million Americans, have some form of chronic pain, or that invisible disabilities such as CRPS, fibromyalgia and migraine disease make up a large portion of that number. It just never crosses their minds that someone in a wheelchair may well be able to stand up and walk around, looking completely ‘normal,’ but still truly need that chair!

July is Disability Pride Month, but those of us with less visible issues can sometimes be hesitant to participate, unsure if we should use the “disabled” label or if it’s really our place. Scroll down for answers to some of the top questions people with invisible illnesses ask about disability pride, disability rights, and disability as a whole.

Invisible Illnesses poster reading "Not every disability is visible" on a blue background with a white human figure standing, and a light blue shadow on the ground in the shape of a wheelchair

1. Do I deserve to / am I allowed to / should I use the word ‘disabled’?

It took me a really long time to feel like I deserved to use the word disabled. Because of course I’m not disabled… I’m just in constant, life-warping pain! But I wasn’t paralyzed, I wasn’t an amputee, I didn’t have cancer… and you can’t see a damn thing wrong with me until I’m in extreme pain. I can walk, I can stand, hell, I can dance! It all comes at a large cost,but it’s a consequence of my invisible illnesses, so nobody can see me hurting.

Screenshot of a social media post: thechroniccommunity says "abled people: can you do the thing?? disabled people: ... technically yes BUT it would hurt like hell/ruin my day/trigger a flare/exhaust me/be a fall risk/make me more sick AND THEN I would have to spend a day in bed/increase my dosage/cancel all my other plans/spend a week recovering afterwards abled people: ... but you CAN do it ..."

It took me SO LONG to even get a disability parking placard, even though I needed it so badly that I should have gotten it literally ten years earlier. I had to learn how to talk in a way that medical professionals would listen to. And it took me even longer to even consider the idea of getting a wheelchair. I could walk, so a wheelchair wasn’t for me. Right? 

2. Can I use a wheelchair even if I only have invisible illnesses? Am I allowed to use a wheelchair if I can walk?

What non-disabled people don’t see is that wheelchairs and other mobility aids don’t hold you back, they set you free. (I’ve personally been really inspired by Selma Blair and her public embrace of using a cane.) I didn’t use my wheelchair in day-to-day life, because I didn’t need it. But in the places I did need it, having it made a massive difference. 

‘What non-disabled people dont’ see is that mobility aids don’t hold you back, they set you free.’ Selma Blair and her public embrace of using a cane has been increidbly inspiring to me.

There are many reasons to need a wheelchair:  Excessive pain, unscheduled floor meetings, uncooperative legs, fatigue zombie attacks, uncontrolled wobbles and more... Many wheelchair users can stand or walk a little but need a wheelchair for activities they otherwise couldn't manage. Many conditions are variable so an individual may only need a wheelchair some of the time. StickmanCommunications.co.uk Copyright © Hannah Ensor 2015. All rights reserved. communications
Copyright © Hannah Ensor 2015 — They sell these at StickmanCommunications.co.uk !

Using a wheelchair made a huge difference for me in situations like:

  • Airline travel. Between the lines to get through security theater, to get on the plane, switching gates… Without that chair, standing that much would just ruin me. Especially in giant airports like DFW, where I usually fly out of, having a wheelchair and a skycap to push you to your gate is a gamechanger. (Not to mention you get to skip much of the security lines!)
  • Participating in marches or protests. Even if I can’t be on the front lines, I want to do something. And sometimes I just want to be there in the flesh, despite all the valid and needed work that can be done from home. (See below)

Resistance for Disabled, Chronically Ill, and Immune Compromised Folx Who Cannot Join the Front Lines,” is a document that explains options for how to protest or otherwise make a difference away from the front lines, specifically focusing on people with disabilities and chronic conditions. It’s very much worth saving a copy for yourself.

I did not produce this, I’m just linking it
  • Going to museums, art shows or galleries, etc. Sometimes these have chairs for rent, but not always, and they’re usually pretty bad. And they assume someone will be available to push you.
  • Local food and drink festivals that were just different booths and line after line after line. (However, I should have figured out a better cupholder situation for my chair before that beer festival…)
  • Attending large conferences or trade shows. Again, lots of standing, moseying along, pausing to look at whatever, standing in line for swag.  

Swag is great! But for presents specifically for the disabled badass in your life, check out this Gift Guide for Chronic Pain

  • Being able to go to concerts! Especially the type of slower indie shows where you’re all just standing and swaying. Believe it or not, for me dancing causes far less pain at the end of the show than if I had just stood in the same place all night. I couldn’t go to shows like that before my chair. Or if I did, I spent a lot of time sitting on sticky beer-covered nasty venue floors leaning against my friends’ legs.
Piece of paper held by a hand with a red stylized image of a dancer and text reading: Balter: to dance gracelessly, without particular art or skill, but perhaps with some enjoyment
Now I live the balter life. Made by Laura Metheney, @lunagaia on twitter.

3. I have invisible illnesses: will people judge me if they see me standing up out of a wheelchair?


Honestly? Yes, sometimes. But keep reading:

Long long ago when flash mobs were still a little cool, a friend set one up at South by Southwest, so I (sorta) learned a dance. She finagled us day passes, so I spent the afternoon in my wheelchair looking at booths. Then it was flash mob time! The music started , I popped up, took a couple steps, turned around, and danced extremely poorly through the whole song. And then I finished, sat back down and wheeled away. (You can see me at the end plopping back down, I’m on the left side in a green shirt.)

Did people look at me weird when I hopped up and starting doing, well, all that? Yes, probably. But at that moment I didn’t care. 

In the interest of authenticity, here is that video of white people dancing extremely badly. Seriously, it’s awful. Just take my word for it.

There have been a lot of other moments where I did care though. I’m not proud of this; in fact I am pretty ashamed that I can’t break myself of it! Ashamed and frustrated and sad.

Rationally I know that it’s bullshit. I know that judgment shouldn’t and ultimately doesn’t matter. And I know that the people who give me looks like that are either ignorant, assholes, or some combo of the two. That’s all true!

But I still loathe, loathe, loathe that moment of standing up out of a wheelchair in public. And I’m a pretty outgoing person who’s not easily embarrassed! Some introverts have an even harder time. The looks you get… it would be better sometimes if someone said something, but it’s hard to wonder how many people in the room are thinking you’re a faker just in a wheelchair to get attention or something.

It sucks. 100%. But what can you do about it? If you let people scare you into staying home, they’ve won– but far more importantly, you’ve lost. So get out there, dance your heart out and fuck anybody who is a small enough person to judge you for it.

For those who are a smidge less outgoing than me, check out Guilt-Free Self-Care Tips for Introverts

4. Am I disabled enough to take a seat meant for people with disabilities? (Even if my pain is invisible?)

I was recently in a situation with a bunch of families with kids with chronic pain, most of whom looked completely ‘normal,’ who needed to get from point A to point B, up to a mile, in 100+ degree heat. There were some major transportation snafus and some of the event leaders who hadn’t ever experienced chronic pain began saying “if you don’t need your seat, please give it to someone who does.”

Yes, that’s a normal thing to hear in the world, and no, they didn’t say it with malice. However, they did say it without any consideration. And when it comes to children in chronic pain but not a wheelchair, physically able to walk but who really shouldn’t, it doesn’t require a huge amount of thought to see why that choice put them in an awful spot.

Tweet by @chronicnotebook One aspect of chronic illness (invisible illnesses) that people don't see is compromise. You're constantly trying to figure out what kind of life you can lead, that will bring you joy without making you feel too sick. That's really hard to do and it comes with a lot of grief, frustration and sadness. 21:53 10 May 22 Twitter Web App .

For those kids, it was a no-win situation. I ought to know, because I was a 16 year old with pain and invisible illnesses! And I know exactly what I would have thought:

“Well, I’m physically able to get there myself, so I ought to give up my seat. Even though the meds I’m on make me overheat and walking through 100+ degree heat could throw me off for the entire week I’m here, or that walking a mile is way more than I am actually capable of and will certainly lead to more pain. “

Or, if I was smart and stayed in my seat, I would feel like absolute shit “taking” a seat from someone who “needed it more.” It is a straight-up no-win situation, and unfortunately, kids with chronic pain run into those way too damn often. At that age they’re still learning what their limits are and how to advocate for themselves. Asking them to determine *by sight* if someone needed a seat worse– in a group of people with often-invisible chronic pain– was…. real shitty! And honestly makes me madder the more I think about it.

However, I did meet a dog named Churro while sitting on the floor between everyone’s legs, which made the situation infinitely better. (This very good boy is a service dog, so I of course asked before I started petting him.)

Posted on Instagram — follow @janetkjay for more adorable dog content and stuff about my life, and follow @Painchronicwordsiconic so you know when this site is updated with new posts!)

5. Do mental health issues ‘count’ as a disability?

It can be hard for people with mental illnesses to feel as if they’re ‘allowed’ to describe themselves as disabled. I mod a little private disability group just for a group of friends. Over the years, it’s gotten to the point where, when I share the link to the group, I explicitly say “mental health issues or brain problems are absolutely disabilities, please come on in.”

Without that, people just assume it isn’t a space for them. And that sucks! There’s a lot that people with different types of disabilities can learn from and help each other with, from treatments that worked to advice on how to navigate the clusterfuck that is American medicine. And there’s a LOT of overlap between physical disabilities and mental health issues. 

Fry from Futurama meme about invisible illnesses with text "not sure if depression is causing flare or if flare is causing depression" from memegenerator.net

Disability Pride: Welcome! You belong! Come On In!

In the end, “disability” may be the biggest tent of all. It is the only minority you can join! The word covers an enormous range of conditions, problems, and treatments, which can sometimes make it hard to form a community without shared experiences. But we are connected by our struggles to find answers, to be taken seriously by the medical establishment, and to just get through the damn day in a way we can be proud of. Embracing disability pride, as an attitude and as a movement, can help you find new answers, ideas and approaches, and to form connections with people, community and activist organizations in your area. Disability pride is for everyone, not just those who fit some mythical idea of what people with disabilities look like.

On a teal background with red shapes and a picture of two men holding a flag that reads "disability pride lead on!" Headline reads "Answering your top questions about Disability Pride Month and invisible illnesses," janetjay .com. Photo from 2017 Disability Pride Parade and Resource Fair and the National Constitution Center and Dilworth Plaza, on Saturday, June 17, 2017. Taken by Bill. Z. Foster https://flic.kr/p/VKTGTm

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1 comment

Carole Griffitts August 5, 2022 - 3:27 AM

Over the last 40 years, I’ve dealt with all these questions (except mental issues). I just decided to do what is right for my needs and try to ignore others’ comments, etc. Thanks for writing.

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