Viral Twitter Thread From Author With Ehlers-Danlos Syndrome Sparks Conversation About Invisible Illness and Ableism

This article was updated Sept. 10, 2018.

Madeline Dyer, an author living in England, was standing in line to check out at the grocery store when the clerk asked her to lift her wheelie basket onto the belt to check out. Dyer knew the basket was too heavy for her to lift — she has a loose spine because of Ehlers-Danlos syndrome.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

As Dyer recounted in a lengthy Twitter thread on Wednesday, when she told the clerk why she couldn’t lift the basket, the clerk laughed. She told her a loose spine isn’t possible, asking Dyer to “just to lift it” again. Dyer continued:

The lady at the till was very patronising, saying she’d have to “walk right around” to my side to lift the basket up, then “walk all the way back,” to do something she still believed I could easily do. I felt embarrassed, ashamed, and very close to tears.

Luckily, at that point, the man behind me offered to lift it for me (he’d listened to the whole conversation) and I was so grateful. But I STILL felt greatly ashamed–and I shouldn’t have.

The lady at the till was very patronising, saying she’d have to “walk right around” to my side to lift the basket up, then “walk all the way back” to do something she still believed I could do easily. I felt embarrassed, ashamed, and very close to tears.

— Madeline Dyer (@MadelineDyerUK) August 28, 2018

The reaction Dyer received from the clerk was one many with invisible illnesses experience. Her Twitter thread gained steam as others chimed in with their own stories.

I also have EDS, and the one that gets me is “Oh my friend has that”, followed by either all the things they can do that I know I can’t, or how much worse they are than me. Not helpful to compare, experiences of the same condition can be wildly different.

— Eleanor Pattison (@Writer_Nell) August 28, 2018

It’s also about not judging someone by appearance. Just because we don’t look disabled doesn’t mean our bodies are capable of much. Or that we aren’t in a ton of pain. Or feel so sick we almost can’t stand it. Many of us have just become really good at making it look normal.

— Crystal (@theMediaChick) August 31, 2018

I have EDS, POTS, & MCAS too. I often end up pretending everything is fine bc it’s easier than explaining that I’m too dizzy to focus even though I’m sitting still at my desk & that I’m so exhausted it feels like every cell is screaming at me

— Katie Quirin Manwiller (@librariankqm) August 30, 2018

I also have EDS and dysautonomia, and I get told I’m too young to have the problems I have or it’s all in my head. People conflate being sick and at home/in bed with being lazy, and it can be really hard to get accommodations for things people don’t see

— Finlay (@wrassefinn) August 30, 2018

Dyer also highlighted why moments like her grocery store run-in can have such a negative impact on those with chronic illness, mental illness or a disability.

So I guess what I’m saying is: don’t assume that everyone who looks healthy/able-bodied IS healthy or able-bodied. And do not question someone who says they medically cannot do a task (even if you think they can). You have no idea how harmful that can be for the person.

(I struggle a lot with feeling guilt over what I *think* I should be able to do, and being called out by strangers for doing something or for not doing something for medical reasons is humiliating, embarrassing, destroys confidence, and lowers feelings of self-worth).

(I struggle a lot with feeling guilt over what I *think* I should be able to do, and being called out by strangers for doing something or for not doing something for medical reasons is humiliating, embarrassing, destroys confidence, and lowers feelings of self-worth.)

— Madeline Dyer (@MadelineDyerUK) August 28, 2018

Even though the who often confront those with an invisible illness are strangers as opposed to loved ones, as Dyer said, it can still have a negative impact. It perpetuates the idea that those who have a chronic condition are defined by their illness.

“I want to be believed and not questioned, but when I constantly have to explain both the validity of my illness and that of what I’m saying to strangers who have already decided not to believe me, I know in their eyes I don’t have much worth,” Dyer told The Mighty. “When I know that’s how some people perceive me, it’s difficult not to have my own feelings of self-worth reduced and so easy to forget all the things I’ve done despite my illness.” 

A young adult fiction writer, Dyer did find inspiration in the conversation her Twitter thread sparked about invisible illness.

“I’ve long thought about writing an own voices chronic illness book as so far all my works have been [young adult] dystopian or fantasy novels,” Dyer told The Mighty. “This Twitter thread has really made me realize how much more awareness needs to be raised, and it’s motivated me to write a character who has an invisible, chronic condition.”

Dyer says she typically uses her writing as a form of escapism, to let her characters do things she might not be able to because of multiple chronic conditions. Now she’s also motivated to remind others that people who have a chronic illness or disability are much more than their condition.

“Several times, I’ve heard myself referred to as ‘the sick girl, but there is so much more to me than that — I’m a writer, artist, reader, with hopes and dreams,” Dyer told The Mighty. “I just happen to have chronic illnesses as well — and it should be true of any characters too, and this is something I really want to emphasize.”

She announced her writing plans on Twitter too, and the idea was embraced by others in the community looking for representation.

What an amazing idea. I had a former student that was diagnosed with fibromyalgia in her early teens. I know the representation would have been profound for her!

And, as someone who is currently battling multi invisible illnesses, I would buy it for everyone I know.

— Rennibeth (@kedernst) August 31, 2018

In the meantime, Dyer wanted to remind strangers like the grocery clerk she encountered to approach others with empathy, because you really can’t “judge a book by its cover.”

“You never know what someone else is going through and the assumptions you make based on what you can see can be really hurtful and damaging,” Dyer said. “Invisible illnesses can’t be seen but it doesn’t make them any less real.”