Tag Archives: invisible disability

Invisible Disabilities: Standing Up for What Can’t Be Seen


Debbie says:

[Laurie and I will be spending the next week at WisCon 40 in Madison. We’ll be back in June.]


May is Ehlers-Danlos Syndrome (EDS) Awareness month.  Until now, I’ve been only vaguely aware of Ehlers-Danlos, maybe a little more familiar with the word “hypermobility,” which I now know is a type of EDS. However, aforalpha’s open letter to the women who gave up their seats on the bus, guest post on Shakesville, will be carved into my memory for a long time:

Yes, at the time I thanked you for the seat.

But see, because you stood up, I was able to work a full day. I was able to sit in a conference room. Give a presentation.

Because you stood, I didn’t have to hold the grab bar. And when I arrived at class, I still had enough hand and wrist strength left to unzip my own coat.

Because you stood, I was able to run errands this evening. I was able to stop by the pharmacy, finally. Tonight I will take my anti-nausea meds for the first time in several days and I will sleep without a bucket beside my bed. …

Every time I don’t need to stand on the bus it saves me that little bit of wear and tear. You wouldn’t think it would matter, but I once spent an extremely tedious and painful occupational therapy session relearning how to press the buttons on the microwave. Everything matters.

aforalpha goes on to describe EDS, a disease with a vast range of presentations, and more about how it affects them personally.

Along with teaching me more about EDS, and helping me put a personal face on the syndrome, the post made me think about seats on public transit, which are a factor in my everyday life.

Since my hair turned gray about four years ago, people routinely offer me seats on the BART and the bus. I don’t need them. I not only don’t need them the way aforalpha needs them (desperately), I don’t even need them mildly. I like having a seat. I’m more comfortable, and I get more reading done. But it doesn’t make an iota of difference to how my day goes. I suspect almost everyone likes having a seat.

I often say no, but sometimes, if the person is insistent, or my feet are tired, or the train car/bus is super-crowded, I say yes. If someone asks for a seat, as aforalpha did, I’m always ready to give mine up. I just hope that the people who need seats in invisible ways are asking. aforalpha, and anyone else who needs it, my seat is yours if you want it. And when I get to the point where I do need a seat, your courage will help me ask.

“Concern Trolling,” or “I Just Want to Help You”

Lynne Murray says:

I recently learned the term “concern trolling,” which describes a kind of verbal attack that both I (a hypervisible fat person) and my friend (who has an invisible disability) have endured in a remarkably similar way. For both of us it comes as unsought advice and pressure from a medical professional, friend, acquaintance or total stranger using a posture of concern to supposedly “fix” us.

My friend, who suffers from a variety of invisible medical conditions, has felt isolated for years in trying to explain why she can’t do various things. Just as I’ve been braced by people who assume they are entitled to share their weight loss suggestions, my friend has to deal with people who dismiss her explanations of her limitations and instead try to force her to do things she literally cannot do, because they assume they know her body better than she does.

My friend’s situation is different than mine: she is quite thin and active in various physical and social activities that put her in touch with people who want her to extend her involvement and push herself beyond her limits. After knowing her for a couple of decades I was surprised to hear that she felt like she was the only one who had this problem and that somehow it was her fault and (worst of all) maybe some of these uncaring, unlistening people were right. Last week she had a considerable revelation when she discovered the Invisible Disabilities Association

“The Invisible Disabilities Association’s vision is to make people living with illness, pain and disability, ‘Invisible No More!”(sm).'” It was founded by a couple, Wayne and Sherry Connell, who are dealing with Sherry’s MS and Lyme Disease.

For the first time my friend felt both validated and empowered by some of the tools on the site (including a fold-over brochure to hand to the intrusively “helpful”).

I’m sharing the website and an excerpt from one wonderful link on it–a clip from Amy-Beth Maran’s article, “The top ten worst suggestions commonly given to someone with a chronic illness,” that wrings some laughter from some of the awful, inexcusable things people say when someone tries to explain an invisible disability.

Sick Humor: The top ten worst suggestions commonly given to someone with a chronic illness

Sometimes you just gotta have a sense of humor!

The top ten worst suggestions commonly given to someone with a chronic illness:
1) Have you tried holistic options? (many. I’ll bring it back up with my doctor on my next visit, thanks.)
2) Could it be your stress? (My opinion is, it is my illness. I’ll bring it up with my doctor though, thanks.)
3) Could it have to do with the altitude? (I’ll bring it up with my doctor…thanks.)
4) I read in {insert any generic magazine here} about a new medication. Have you heard about it? (I was on it when it came out 17 years ago. but I’ll bring it up with my doctor. thank you.)
5) Have you thought about being in a trial study? (I’ll ask my doctor. thanks?)
6) WOW. If I were you, I don’t know what I would do. I might just kill myself. (Thanks?)
7) Have they found what is causing the problem? (no. my doctor is an idiot. I’ll remind him, thanks!) Have you tried hypnosis? (I’m still sick, but when the phone rings I bark like a dog.)
9) Have you googled your illness? (….no! thanks!)
10) Have you ever thought you were getting sick because you haven’t wrapped your house in aluminum foil because, you know, the aliens have been bugging our houses for the past 30 years and in some cases, making people really sick. I read on…..gee I lost the web site. but it’s true! I heard it from Sally’s cousin’s sister-in- law. And then every time you use deodorant you would think you would be warding off these bugging rays, but it still makes it worse, so you are not being pro-active to your health by wearing that deodorant. I can’t believe you! If you wanted to get better you would stop wearing deodorant..(voice gets fainter and fainter the further you just walk away.) THANKS!!!!!!!!!!