Peoples acceptance of disability/illness

Mrs_Ryan

Im really shocked to read about people's experiences on here - some people can be so narrow-minded! :eek: :mad:

I have severe PCOS with complications (Im hypoglyceamic and also have extreme tiredness - when I was really bad I couldnt even walk up a flight of stairs and would sometimes sleep for 18 hours a day, also when my blood sugar is too low I get confused and my concentration goes completely)

When I failed an important exam at uni, I appealed on the grounds that my tiredness affected my concentration so I was unable to concentrate sufficiently. The appeal was refused on the grounds that 'a gynaecological condition could not possibly have a bearing on my ability to perform in the exam' They had also failed to take into account the fact that a male student could not possibly suffer from this condition, therefore effiecitvely barring any appeal for a condition that could not be compared with an average student of either sex. (For example, an appeal based on say diabetes or epilepsy would be allowed, but because my condition is specific to females an appeal on those grounds would not be possible - sexist as well as unfair :rolleyes:)

I won the second appeal after the senior partner in my GP's surgery wrote a very strong letter explaining that far from my condition being just a few heavy periods, it was in fact a chronic life-long condition which had serious adverse effects on my physical and mental health. I might add that I was only the second person to win my appeal in recent years - second appeals were only allowed under the rarest of circumstances. Sadly, I wasnt able to return to the course but to me it goes to show - I would absolutely love it if my condition was just 'a few heavy periods' but unfortunately it isnt and it annoys me greatly when anyone thinks Im laying it on and theres nothing worng with me :mad:

System

I've found that a lot of people appear to be more sympathetic and understanding of those with physical/visible disabilities.

I have a mental illness (and PD) and as no one can see it you wouldn't think there's anything "wrong". But then unless they see me having an episode (hearing/seeing things, panic attacks, trying to kill myself) they don't see what really goes on.

I've even tried to break bones before as i felt that at least if there was physically something wrong someone would see that this is real and not just in my head/fake

jennilb

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!!

linni

I often find that it's friends that are the problem because they can't accept that I am not the same any more whereas total strangers will accept me as I am now (if that makes sense).

Indie_Kid

Vicky123 wrote: »

"is severely autistic and they all scream"!

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!)

not sure how frightening it is to see someone stare off into the middle distance lol!

It's !!!!ing scary. I've watched my dad have one and was crying because I was so scared. We didn't actually know he was fitting though.

Vicky123

I know they don't all scream my older son is also autistic, higher functioning, two of my brothers are Aspergers.
My point was the doctor was using autism as an excuse not to examine which imo is pretty much discriminatory, but try proving that.
HE was saying they all scream, not me.

LadyMorticia

linni wrote: »

I often find that it's friends that are the problem because they can't accept that I am not the same any more whereas total strangers will accept me as I am now (if that makes sense).

I agree. I lost many friends when I was diagnosed with Borderline Personality Disorder. They thought it changed the person I was. It didn't. I had had all the symptoms of it throughout the time they had known me. It was only when it was given a name, did they decide they didn't want to be around someone they deemed a "freak". :rolleyes:

Doom_and_Gloom

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:.

linni

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!

Doom_and_Gloom

linni wrote: »

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!

I have wacked people before with my walking stick I have to say . People were dancing around near me while I was sitting and would go into my worse side as they were so drunk they didn't notice me. Once I would understand to a point but constantly and I'm not going to 'stand' for it . I don't think they really noticed that I did it but it made me feel better :rotfl:.

As for those that push you out of the way (yep had that also) I've been known to swear at them loudly as I get my balance back.