On Twitter, @MadelineDyerUK started a thread sharing her personal experiences with having Ehlers-Danlos Syndrome, an invisible disability that, according to The Ehlers-Danlos Society, "is generally characterized by joint hypermobility, skin hyperextensibility, and tissue fragility."
Something that really sucks about having an invisible disability or illness is people automatically expect you to be able to everything an able-bodied person can. And then they’re surprised when you can’t... (This is gonna be a thread, by the way...)
An invisible disability is "A physical, mental, or neurological condition that limits a person's movements, senses, or activities that is invisible to the onlooker," according to the Invisible Disabilities Association. "The very fact that these symptoms are invisible can lead to misunderstandings, false perceptions, and judgements."
She discussed the assumptions people make about the validity of invisible conditions, and how they expect people with those conditions to still do the ordinary things that able-bodied people can do.
And when they (inevitably) say, “But you don’t look ill/disabled/etc” it feels like they’re questioning the validity of our illnesses and disabilities, like they don’t believe us because they can’t see how someone could have an invisible condition.
Immediately, others began sharing their own experiences with having an invisible disability or sickness, like this twitter user who has Bipolar disorder and Hypothryoidism and gets "told by people who don't know [her] that [she's] too young to have any problems..."
@MadelineDyerUK I havw Bipolar disorder and Hypothyroidism which I'm pretty sure is actually Lupus cause I'm showing more symptoms that lead up to that and it runs in my family. I constantly told by people who don't know me that I'm too young to have any problems..
Another user shared that they had to lie about "the extent of one chronic illness" to avoid educating people about how their body works.
@MadelineDyerUK At one point I started lying about the extent of one chronic illness to avoid these exchanges about another because asthma is still something people get as "real." Getting super tired of having to weave a narrative so that how my body works "makes sense" to people.
@Writer_Nell expressed how upsetting it is when people bring up a friend with the same condition, "followed by either all the things they can do that I know I can't, or how much worse they are than me..."
@MadelineDyerUK 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.
@jaydott1409 shared how they are always "called lazy or told [they] need to exercise more and the pain will go away," although they have spastic diplegia and even walking or standing for an extended time is painful.
@MadelineDyerUK @HPLehkonen I have spastic diplegia, though because of years of physical therapy when I was young the visible symptoms are almost non existent unless I’m in extreme pain. However, walking or even standing for an extended time is extremely painful for me. Because of this I have to sit often