Peoples acceptance of disability/illness

starnight_2

I have to say I've been lucky with my friends, though I'd known them for nore then 10 yrs before being diagnosed bipolar. But I have had problems with my upstairs neighbours, who I used to get on greatly with, talking, xmas cards, if I needed advice on something, helping my with things around the house (I'm single and sometimes need help fixing things XD) But since they seen me carried off to hosp and when I got out one of them has barely said 3 words to me, the other (husband and wife couple) doesn't even acknowledge me when I walk past them!!! I feel like asking them how have I changed since they have known me?? (approx 5 yrs)

seven-day-weekend

sh1305 wrote: »

Do they really?! My brother and a friend (not the one mentioned in my previous post) do and can talk. (and don't shut up!)

Same as my son who has Asperger's Syndrome (another invisible disability that has in the past, especially when he was little, been classified as 'naughty', 'irritating', 'immature', 'lazy' , 'clumsy' etc).

Although in the 1980s when he was a child , AS was not recognised as a separate condition, and he was never diagnosed. I hope children with this condition would not be labelled this way now.

HGLTsuperstar

Depression = Stop sorry for yourself.
Anorexia = Just eat more
OCD = Don't be such a control freak
Low Self Worth= Why do you take everything people say to heart?

See there is an answer for everything. God, why are we all so screwed up when "normal" people have all the answers!

rosysparkle

HGLTsuperstar wrote: »

Depression = Stop sorry for yourself.
Anorexia = Just eat more
OCD = Don't be such a control freak
Low Self Worth= Why do you take everything people say to heart?

See there is an answer for everything. God, why are we all so screwed up when "normal" people have all the answers!

Very true!

I have been tutted at when walking slowly with a stick. Some time ago I was in Tesco and an employee grabbed me round my waist and moved me to one side - I wasn't taking up the whole aisle and he didn't have a cage or a trolley, I was just in his way and it was too much trouble for him to take one step to the side or even say "excuse me". My daughter wanted to complain but I was so upset and humiliated I just wanted to get out of the shop.

That was a little while ago, now I need a wheelchair to go round a supermarket. I don't mind childrens' stares and I find teenagers are most likely to be helpful, but some people (usually adults) seem to see wheelchair users as a personal insult, as if I have no right to be in the same shop as them.

Also, I've lost count of the number of times someone has held open both sides of a double door, thus placing themselves squarely in the middle of a doorway. Er, how can I get past? :rotfl:

Indie_Kid

seven-day-weekend wrote: »

Same as my son who has Asperger's Syndrome (another invisible disability that has in the past, especially when he was little, been classified as 'naughty', 'irritating', 'immature', 'lazy' , 'clumsy' etc).

My brother was labelled the same and my parents got told it was their fault.

Ditto - doom and gloom - and push you out of the way - one day i'm gonna wack them with my stick and see how much pain they can stand!

*makes note to never bump into linni*:p

sleepymy

Doom_and_Gloom wrote: »

I know how you feel. I've had people ask whats wrong with me and when I reply that I have a split spinal cord (diastomatomyelia) that is also teathered with a spinal cyst I always get the same look on their faces (simular to this - :shocked: ) with a non responce or them saying ouch :rolleyes:. What I have isn't very common so people don't know how to act around me. I've even had people just say I have a 'bad back' and that it's not as bad as I make out!

When I do go out I have many people stare at me as I walk with a walking stick which for a 20 year old is obviously rare. Just because you have a visible disability does not mean you will get better treatment off of people. I've even had people tread on the backs of my shoes as I was not walking fast enough even though they could easily see the walking stick :mad:. It seems that young people can't possibly be physically disabled unless in a wheelchair!

I'm learning to live with it but it's difficult as I don't want to take any of the pain killers or use the local anethetic patches. This means that the neurosurgeon I see doesn't know how to deal with me as it seems he only knows how to administer drugs :mad:. I think they doubt the amount of pain I am in as I don't take anything to 'help'. I'm not bad enough for surgery but even if I was it was be advised against because of my age and the side effects yet they forget about the side effects of these painkillers etc. on someone my age :rolleyes:.

I had to use my rollator at the Christmas fare last year. As I was stumbling along I was suddenly jolted to one side nearly falling over. When I looked round realise that some older guy has shunted me out of the way with his huge belly as he pushed through the crowd holding his walking stick about people's heads. He was looking at my rollator as he did it and the woman who was following him saw me stagger & just waltzed on 0_o

GlasweJen

I have neurocardiogenic syncope and dyslexia. I was recently told at work that i can't possibly be dyslexic because i'm clever enough to work in 2 speciality departments (which is unheard of even for "normal" people).
When people see me having an episode they assume that i'm on drugs or that i'm drunk. My own sister thought i was faking the illness right up until i got the pacemaker put in when i was 21, i first started getting symptoms when i was 8!

Doctors told my mum that i was neurotic, that i had middle child syndrome, lone twin syndrome, munchausens by proxy was also suggested. It was sheer chance that my GP mentioned tilt table testing and that i coded 7 times in the 90 minutes it took them to remove my appendix when i was 16, i was diagnosed just before my 18th birthday.

Trialia

Ugh, yes! I get this !!!! all the time.

I'm 23 and have fibromyalgia, EDS/hypermobility (severe), asthma, migraines, mild Asperger's and rapid-cycling bipolar disorder with psychotic features. To people who don't know me, I look fine. I've often had people at counters not know I have problems simply because they can't see my walking stick... And I get insulted and denigrated over all of this a heck of a lot. I'm so sick of it all.

Mrs_Ryan

I really feel for all of you who have experienced people giving you negative comments etc - my mum is very severely disabled and as she said 'my legs might be knackered but there's nothing worng with my mind!'

I've never been one of those people to stare at someone different, but I really realised how it felt earlier this year. Due to another side effect, I lost a very large clump of hair from the front of my head (I have long, thick, curly hair so it was VERY noticeable) and I usually wore a scarf or bandana to cover it up. But it was a hot day and my head was itching so I took it off. I went into the toilet at a major London railway station and when I came out I caught several people openly staring at my bald patch which made me feel really self-concious. It just made me realise that people will always stare if someone is 'different'

However, there is still no excuse for ignorance in ANY case.

sandy71

jennilb wrote: »

When I was 6 I got diagnosed with epilepsy. People told my mother 'it's such a shame as she was such an intelligent child' and refused to allow their kids over to my house in case they caught it / saw me have a fit and got frightened (I have absence seizures - not sure how frightening it is to see someone stare off into the middle distance lol!). Anyway, after only 14 years(!) of trying, 10 years ago they found a drug that stops the fits.

Now I have emotion dysregulation disorder (aka boarderline personality disorder), severe depressive disorder, generalised anxiety disorder and emetaphobia. And people are as bad as they were 24 years ago with my epilepsy. I basically have 2 friends and my boyfriend who see me regularly, and many many people just couldn't cope and disappeared from my life. I lost a job paying £35K and have just failed my ESA medical and am about to appeal. My life has become small and miserable, and I hate being poor and sick. But apparently I'm just 'weak willed' and 'malingering so I can live off the state'.

Having said that, the worst thing that someone ever said to me about disability was about my epilepsy. A man at a party told me that he was devoutly catholic. He knew about my epilepsy because at the time I was disabled students rep on the Union at Lancaster Uni and he was a student too. He then told me that as I had epilepsy I should live a celibate single life because I should not have children as I was unfit to be a mother and could give epilepsy to my kids, and I should not date because I would be preventing a man from having children while he was with me. Words fail me!!

Nothing changes does it!!! Some of the parents at my kids school have stopped their kids coming to play in case they catch it from me :mad:
I have partial seizures and tonic clonics and the amount of people who think once I have had one I should just get up and carry on as normal. I have been shouted at for sitting in one of the disabled seats on the bus because there is nothing wrong with me. This was after a tc which causes me to have no balance as well as pain and tiredness.

14 years of trying to find the right drug:eek: I'm not sure I can cope for that long.