What do you wish everyone knew about your disability?
I wish people knew that Chronic Fatigue Syndrome isn't caused by lack of sleep! It's so frustrating when I say "I have a CFS" and they say "then get more sleep, silly!"
@FabulousFox Yes, I feel like fatigue is a symptom that is quite misunderstood by most.
that it doesn't hold me back
@Emily1256 Awesome! I'm sure people become aware of it once they get to know you!
I think over the years , I,ve learned not to care about what people know or dont know about my disability ...I had a stroke at 57 , now my memory is affected as is the left side of my body , the depression was bad for a couple of years , but I recognise the fact that practically anything can be achieved with love and support . I think this organisation is a great thing and I,ll get my girlfriend to participate If I can , she has mental health problems and sometimes self harms .
@Joannadavid1 I'm glad you like it hear and that you've come to a point where others don't affect you much. Hopefully your girlfriend finds this place helpful too!
Not every disability is physical. I have chronic illness that no one can see, so I am often not believed. People believe I am faking it or it is not as bad as I am making it seem.
@Dgm18 Yes, there are so many different types of disabilities, and we all need to be believed!
I wish people knew the celiac is real! Also, it's a spectrum for some it leads to wild secondary conditions that knock them off their feet for others it's milder and is overall sated by going gluten-free. I wish people with celiac would be accepting of both sides of the spectrum, too. Don't shame people who don't have secondary conditions, don't shame people who have secondary conditions.
I wish people knew what dysautonomia is and that it's not rare. similarly, I wish people understood it's also a spectrum!
@delicatdreamer16 I think the awareness regarding both is increasing at least!
I wish that people were respectful with wearing (or *cough cough* NOT wearing) a lot of scented products/perfume. I've gone into anaphalyxis multiple times due to that.
@ImaginativeShade I hear you, scents affect me too, although they don't trigger anaphylaxis for me.
I also wish more companies made it easier, my household is scent reduced, but not scent free as it's hard to get scent free everything.
How lonely and depressed and worthless I feel. 😞
@bgdave I'm sorry to hear you feel like that. I do hope things improve for you.
I just wish people knew about it at all. I want people to recognize that just because I look happy doesn't mean I am. Because I'm not. I'm not happy and I'm not okay.
@juliergreen04 Do you have anyone in your life who is aware?
Nothing no one is gonna care what my struggles are I'm not important I'm just another 1 in 450 million in this country my own family doesn't care or visit or treat me with respect. I've been horribly disabled for 15 years trust me the world is too busy dealing with their own issues to worry about ours.
just because you cant see it, or youve never heard of it, doesnt mean it is not there.
first of all, hi my name is bella, and i suffer from mast cell activation syndrome or MCAS. when people ask what that is, i basically describe it as, im allergic to nothing and everything. im allergic to myself.
my body releases too much histamine. you know the thing that makes you all itchy and gives you hives? yeah that. i know what youre thinking so you get extra itchy? that sucks but deal with it. no. thats not it at all.
my body doesnt know how to react so it fights everything. and i mean everything. my body starts attacking itself. there are no triggers and it can happy at any moment. i will get sent into anaphylaxis or near anaphylactic shock.
i have constant seizures and pass out almost daily. i am constantly dizzy and always uncomfortable.
people dont understand. and i dont expect them too. but all i want them to know, is that it is real. and it is awful. just because you cant see it, doesnt mean it is not there.
