I'm trying really hard here, and yes, THIS is my best, and yes I know that's sad.
I’m Issy, I’m 29, and I’m disabled. I have Epilepsy, Hypermobile Ehlers-Danlos Syndrome, Borderline Personality Disorder, Dysautomnia, and I’m Neurodivergent. I’m male, but I try to be as gender non-conforming as I safely can. My inbox is always open.
Hi neurosurgeons should not be diagnosing eds. They can suggest you may have it. They can refer you to the proper specialist to diagnose. But they should not be diagnosing people. That’s all.
Any specialist who starts diagnosing conditions that fall outside of their specialism needs disciplining.
How to talk to doctors when you’re chronically ill
Always be deferential
Pretend you don’t know any three-syllable words
Use small words
Don’t use technical language about the disorder you’re living with (this can make you sound like you’ve been spending too much time on WebMD, which means you a filthy liar and a fake)
Don’t use casual language; doctors don’t understand any words that aren’t shown in a textbook
Don’t be too descriptive when talking about your pain (this makes you sound too emotional, which makes you sound like you’re exaggerating, which means you’re a filthy liar and a fake)
Don’t mention your other diagnosis/es - one appointment, one problem
If you’ve heard of a treatment that has worked for your condition that you haven’t tried yet, no you haven’t.
Remember to remind the doctor of your medical history in full, so that they don’t prescribe you something you’re allergic to, and if they do it’s your fault
Don’t talk about medication, you drug seeking addict
Make sure to mention what medication you’ve already tried to save the doctor’s time trying to prescribe it again
It is up to you as a layman to know what drugs interact with what drugs you might already be taking; never check with the doctor, it is annoying to them
NEVER finish a sentence.
Could this symptom be related? No. No, it can’t. Don’t bring it up.
Don’t leave out anything that could be vital to your diagnosis or treatment!
Pretend you don’t know anything about your disability: doing otherwise provokes a threat response in doctors, which can present as correcting you incorrectly, or just shutting down and dismissing you entirely
If you are seeing a specialist for an un-related issue, make sure to let the doctor know; they’d like to join in and LARP as a specialist too!
Do not mention what it could be, because that is what it is not.
Always be deferential. (I mean, licking the floor is going overboard, but a little kneeling never hurt anyone)
And remember:
If it works, it’s because the doctor did something right.
If it doesn’t work, it’s because you did something wrong.
[image description: a text post from Facebook from Jim Bombeck on July 6 that reads “Ok hear me out…an old-fashioned candy necklace but with Tums and Ibuprofen.”]
you do not need to be in constant pain to own a cane.
folding canes have a clasp or band to keep them folded. losing the band is a pain in the ass.
you will get dirty looks
it does not matter what age you are. you will get dirty looks.
you have to hold it in the opposite hand as the disabled leg. this is fortunate, as I am right handed, so i hold it in my left hand to support my right leg.
people will try to steal your cane from you.
when standing still, I hold it in my right hand unless i need to do something right handedly. this does not work as well as i thought it would.
being visibly physically disabled is difficult. having a mobility aid will help with pain and movement, but some people don’t get them because visible disability is treated with disgust.
if someone meets you for the first time, and you don’t have your cane, then they will like you more, but they will not believe you are actually disabled.
if someone meets you for the first time, and you have your cane, they will not treat you the same.
the majority of other cane and mobility aid users I have met are homeless. I live close to a big city.
People do not want to see you being disabled.
you will not hear of the benefits of using a cane from anyone who does not use a cane.
no one will prepare you for the world of being visibly physically disabled. however bad you think we have it is usually not from the disability at all. I can deal with pain and I can deal with an indisposed left hand.
the hardest part of being disabled is the fact that no one will care until you make them care.
the disabled seats on trains are a suggestion
the disabled seats on buses are a suggestion.
you will have a different experience with using a cane than I have had.
your hand will become tired. you are using it as a leg.
your cane is legally a part of your body. this will not stop some people.
you are not your disability. but it will affect you.
i love you
theres always an invisible someone who has it worse. that person will not be affected or offended by your use of a cane. take the damn ibuprofen. put the folded cane in your bag. ask your friends for help. gd knows they need help sometimes too.
you will have to learn that things will be impossible to you. you may not run as fast anymore. you may not become a skater, like you always wanted to be. you may be left behind when everyone else runs ahead.
you deserve better.
your cane handle gets dirty. wash it.
some days pain is worse. some days you will feel it the moment you wake up.
no one deserves pain. the human condition is not to suffer. we deserve better. we deserve to be loved and not tolerated. we deserve to be seen better than from the corners of eyes. we deserve to be heard better than an afterthought at a meeting.
struggling with mental health does not make you a bad person. having an illness or disability is morally neutral. and even if you do bad things, you deserve support. mental health care is a human right. and there is always hope, for both our wellbeing and who we want to be.
