I’ve been following the You & Yours spot about ME/CFS on BBC Radio 4 out of idle curiosity, I’m not expecting any great shakes from it but it’s certainly pulling a few cockroaches out of the woodwork..
Perhaps my response to this post on the BBC message board is so strong because as a student having a day off through the effects of ME/CFS it felt directed at me personally, I’ve been off college today because I’ve spent the last couple of days in bed, yesterday was a complete wash out – on the plus side it’s been a long time since I had a day that bad (needed help to go to the toilet and had to eat all my meals in bed, just sitting up to play a 5 minute card game totally wore me out!)
Listening to the You & Yours section today on ME made me so angry. I work as a Disability Support Worker in a North of England university, supporting genuinely disabled students with conditions such as Cerebral Palsy, deafness, leukemia etc. with their studies. Often I have had students claim to be suffering from ME, listing the usual vague symptoms (most of which we all suffer from at some time but just dont go on about it). They then claim they are too ill to continue with studying and either slope off home or demand that Disability Service resources pay for notetakers etc to basically do their work for them. These students are always from supportive family backgrounds where parents pander to this self obsession. Websites and support groups feed the fantasy. In my experience this ‘condition’ does not exist in a medical sense. It is just another expression of the obsession with self so prevelant today. As my 93 year old Gran says: there was no ME in my day, we didn’t have the time.
It’s made me so MAD! but then, this is exactly the response we get from people all the time, sadly from people like this woman who are supposed to be there to help us.
I’m just so glad that Thelma isn’t like this! I’ve definitely dropped lucky with my support worker at college, she’s been as helpful as she could possibly be, she talked me into getting a lift key even though I feel like a prat using the lift when it’s quicker to walk (I have to admit though, not tramping up and down stairs does make a difference, i’m more alert in class!) She’d even like me to go with her to talk to people about the illness if she’s called upon to do a presentation just to make sure the correct point is put across!
Yup, thankfully MY support worker is not cut of the same cloth as Loulouham!
Anyhow, I put in my tuppence worth on the BBC message board, since my response has yet to be moderated I’ll share it with you guys here:
Unfortunately Loulouham it’s people like you who make me so angry.
Just because you cannot visibly SEE the effects of an illness does not mean it isn’t there.
The students you are maligning only manage to make it into class on their good days, the reason they have such supportive parents and carers is because THEY see what that student is like on the bad days when they can’t get out of bed and need carrying to the toilet, when they are crying at the frustration of being able to do something one day and not the next.
ME/CFS is hard enough to deal with at the best of times but when a ‘support’ worker won’t give you the support you need because they disbelieve in your illness – well I think it’s hardly surprising most of them in YOUR university leave.
Fortunately I’m studying at West Herts college on a course franchised from Hatfield university, My support worker has been both helpful and supportive, this has enabled me to study without too much worry – you see stress exacerbates this illness, people like you ADD to that stress. It seems obvious that in your capacity of support worker you have failed those students because of YOUR prejudice.
Imagine having full blown flu ALL the time, then add onto that blinding headaches, crippling pain.
SO tired that you can’t think, in so much pain you can’t function and people telling you it’s all in your head because every test comes back negative.
Go a couple of years down the road from that, you’re now accustomed to the pain so can ignore it most of the time, you husband your energy so that you can do a course of study in order to better your position in life – despite having to rest on the days you’re not in class.
Then you have to deal with the ill concealed dislike of someone who is supposed to be your liaison with staff members, sneering as you ask for help.
I assume you are aware this controversy should have been effectively ended by a report from the Chief Medical Officer for England in 2002, which concluded that ME/CFS is a genuine and disabling condition.
CFS and ME are also classified by the World Health Organisation as neurological disorders.
..but then obviously your experience is so much more balanced and objective than a report by medical professionals who stake their reputations on findings such as these.