Comments that bother us...disability edition | ft @ChronicallyJenni

the "don't let it stop you" thing to me feels like 'i'll only respect you as a disabled person if you don't struggle/ask for accommodations/are "productive" and aren't a "burden" to society'. its that idea that you have to jump through hoops to Prove to a capitalist society that you aren't "lazy" in order to simply EXIST as a disabled person.

When they say "But you don't look sick," the proper response to them is "But you don't look stupid."

Mine is when my family tells me not to use my mobility aids "because I might become dependent on them" ....

Mine is “ Well you will get better soon.”

I have hEDS, but I've also had three cancers. As a cancer survivor, I am extremely offended and pissed off whenever people say that someone "lost their battle" with cancer. Firstly, it's usually not even the cancer itself that kills them, but rather a complication or secondary issue. Secondly, it completely cheapens each victorious day that the person fought on and lived. Thirdly, having cancer isn't some sort of game to win or lose, and referring to the deceased as the loser in the situation is completely offensive!

I hate getting the "are you sure?" after telling someone a diagnosis.

I've had trouble convincing my family to let me use mobility aids in the past because they were afraid of the connotation of disability. I completely agree people need to normalize the word.

"Get better soon" " Your too young to be that sick" " you don't look sick" and my absolute biggest pet peeve. " its just because of your anxiety/ depression"

I hate the “how are you?”/“How do you feel?”- no matter if it’s family or a stranger it’s a bloody minefield... if you answer honestly it’s awkward and they don’t really wanna know and if you say Fine/ok/good it’s open season for either an insistence they really wanna know (they usually don’t) or they say something like “so glad you are getting/feeling better”. Drives me nuts.

The one I despise the most is "how can you be tired? You haven't done anything today!". It usually comes from people close to me, and I need to remind them that I still have EDS and POTS even if I "seem alright"

I got the "you're too young for that" yesterday when I was telling my fam about my herniated disk. Sorry, I'll tell my chronic pain to wait till I'm 50

my personal least favourite is definitely “get better soon!” i know they mean well but it hurts that i know i wont

Person first language in the mental health community seems to be more popular with family members than those of us who are sick.

“Are you feeling better yet” 😩😩 no it’s not curable Karen

I think “Are you feeling better?” is one of those things that hits differently depending on who’s asking. If it’s someone else chronically ill/disabled who’s asking, I know they mean something closer to, “Is today any better than yesterday?” But if it’s a relatively healthy person, or a random acquaintance, I know they will assume that “better” means 100% better. They don’t understand that the nausea is almost allllways there, the dizziness is almost always there.

The best point I’ve heard in the debate between person-first (person with disability) and identity-first (disabled person) is the comparison to the way we describe other identities. We don’t say “person with blackness/whiteness/femaleness/youth” etc. We use adjectives to describe ourselves! It doesn’t make us not people! I respect those who prefer person first language but I personally, as a disabled person, don’t relate to it at all. Disabled isn’t a bad word. Use it!

I got diagnosed with hEDS about a year and a half ago. Some people think I'm too young to be in any real pain and others just treat me like I'm fragile once they find out, I do not like it at all. Also when people ask me whats's up with my "gloves" when I'm wearing hand braces. I'm so sick of explaining it.

The ' Oh I would kill myself if I had that' bothers me so much like actually what if your mind made you think that was OK

"Oh you look so great!!"... Makes me die a little inside. Almost every time I hear that, I feel like utter death. If I have lovely rosy cheeks and shiny eyes and I'm wearing makeup, it's usually because I'm in intense pain and trying to mask so you don't realise I'm about to lose my lunch.

I was diagnosed with hEDS when I was 34. I already had 4 sons.
I never shared my diagnosis with my family, although 2 members were there when I was diagnosed. Now years later when my illness is wreaking havoc on my body, the 2 members don't remember even being at the geneticist with me. When I'm flaring I hear from 2 of my own sons
"Oh there's nothing wrong with you, you're just OUT OF SHAPE or YOU JUST LET YOURSELF GO", I have also heard "Is it FATAL"? And doctors are the worst. I'm switching doctors because she thinks I'm a hypochondriac and I was diagnosed at Cornell in Manhattan by a well respected geneticist. I'm frustrated. Long Island has no EDS doctors, even the doctors who say that's their field do not know what they're talking about.