Peoples acceptance of disability/illness

shazrobo

i have two sons with severe ADHD, oppositional defiant disorder, and conduct disorder, both attend special schools, and need constant supervision, yet ex friends just used to label them as naughty.
i suffer badly from depression, i get told to pull myself together, after a recent failed suicide attempt, the hospital doctor told me off for being stupid :mad:

colin13

I think wot we have to remember that these people are losing a friend or relative that theye used to know and love,,it does not help me seening friends with the im sorry face on,,when they c me walking with walking stick,,it not all ignorance on there part it is as hard for them to c u unwell ,,as it is for us being unwell,,my wife once told me she always says when asked how i am ,, that i am ok,,she then said I dont know who I am saying it for,, me you or the friend asking after you,,

Trialia

colin13 wrote: »

I think wot we have to remember that these people are losing a friend or relative that theye used to know and love,,it does not help me seening friends with the im sorry face on,,when they c me walking with walking stick,,it not all ignorance on there part it is as hard for them to c u unwell ,,as it is for us being unwell,,my wife once told me she always says when asked how i am ,, that i am ok,,she then said I dont know who I am saying it for,, me you or the friend asking after you,,

But no, they're not losing us at all. That's the thing: despite the disability, we are who we were before, we're just changing in some ways - as people do over the course of a lifetime - but it doesn't mean we're not the same people with a slightly different viewpoint.

Invasion

I'm still me, just poorly and disabled! I'm the same person that I always have been, if anything I'm an improved person personality wise! No-one's lost me, I've lost people, who can't accept the outward changes in me- wheelchair etc.

LadyMorticia

I had all the symptoms of my mental illness for years and people were still friends with me. It was only when I was diagnosed, that people decided they didn't want anything to do with me. =/

Marsh_Samphire

Invasion wrote: »

ME/CFS isn't the "current" name for tired all the time.... it's utter exhaustion totally unrelieved by sleep, it affects temperature control, disturbs sleep, affects muscles, causes extreme pain, affects balance, causes light, noise, smell sensitivity.

I'm sorry if you knew this and I'm sounding patronising, but there is so little understanding about ME without people describing it as tired all the time. Plus, so many people who self diagnose CFS/ME because they're tired!

Yes I do know all this and do have all of those. My GP, consultant and occupation health all have been great. It was the phrase used on me by my manager, who knows as much about it as a goldfish does about the moon. Sorry, should've made it clearer/used "" to indicate it.

willa

Invasion wrote: »

ME/CFS isn't the "current" name for tired all the time.... it's utter exhaustion totally unrelieved by sleep, it affects temperature control, disturbs sleep, affects muscles, causes extreme pain, affects balance, causes light, noise, smell sensitivity.

I'm sorry if you knew this and I'm sounding patronising, but there is so little understanding about ME without people describing it as tired all the time. Plus, so many people who self diagnose CFS/ME because they're tired!

Research in America is pointing to a specific viral link now. (Woohoo! No it's not psychosomatic or neurosis thank you!)
This site has a good symptom list for M.E. and can be useful for back-up in the face of all the confusion that abounds about M.E./CFS:

http://www.ahummingbirdsguide.com/

A good thing to emphasise if trying to explain it is that, as the name CFS states, it is a syndrome, ie. has many symptoms other than just 'tiredness' (utter exhaustion/depletion).
I'm not saying anybody here has said anything wrong at all. I'm just posting this because I have deep personal experience of frustration about having this condition the lack of sympathy/understanding that is so common around it.

absolutebounder

willa wrote: »

Research in America is pointing to a specific viral link now. (Woohoo! No it's not psychosomatic or neurosis thank you!)
This site has a good symptom list for M.E. and can be useful for back-up in the face of all the confusion that abounds about M.E./CFS:

It has been linked to a lot of things including Candida in its fungal form boring through the intestine causing leaky gut syndrome.
However the virus research is of course interesting though from the figures in the link http://www.meresearch.org.uk/information/publications/xmrvfind.html
I wouldnt have thought too conclusive.
More study needed

Rochelle

I have chronic osteoarthritis in my neck, back, shoulders and knees and also very bad sciatica and sleep apneoa,and a bad weight problem but although have lose 4 stone since june my health is getting worse, i walk with a stick but much prefer to hold on to a shopping trolley in the supermarket for support as my legs collapse quite often.
I am sick and tired of people especially older people telling me i should not park in the disabled bay although i have a blue badge and even have the cheek to tell me i should stop using someone else's card

Chopstheduck

Rochelle wrote: »

I have chronic osteoarthritis in my neck, back, shoulders and knees and also very bad sciatica and sleep apneoa,and a bad weight problem but although have lose 4 stone since june my health is getting worse, i walk with a stick but much prefer to hold on to a shopping trolley in the supermarket for support as my legs collapse quite often.
I am sick and tired of people especially older people telling me i should not park in the disabled bay although i have a blue badge and even have the cheek to tell me i should stop using someone else's card

I've noticed that a LOT, especially with older people too. Unless my son is in his wheelchair they don't think he can possibly be disabled!