Sunday, 1 May 2011

Blogging Against Disablism Day 2011

I have just discovered that today is Blogging Against Disablism Day 2011.  See here for more information about the Day:

There are many aspects of disablism which I could talk about, not least that I suffer from a chronic illness and constantly question in my head whether I consider myself to have a disability or not, but perhaps interestingly, whether the rest of the world considers me to have a disability.

The problem with M.E. is that its cause is unknown, there are a few different definitions, symptoms vary widely, the condition fluctuates and there is no one agreed treatment.  Services and clinics for M.E. sufferers vary around the country, with some areas having no clinics, and a variety medical specialisms taking the lead in other areas, whether its psychiatry in one area of the country, it could well be endocrinology in another.  Add to this that the government is making it so difficult for people to qualify for and retain welfare benefits - means that many people feel their disability is not recognised.

I had a GP tell me a few weeks ago that I needed to put my illness in a box and forget about it.  I just need to push against it, and get on with living life.  That I need to stop depending on my husband and be a better wife to him, and that if I ever wanted to have kids, I would just need to get over this.  Needless to say I was fuming at this archaic attitude.  Luckily for me I have a reasonably good understanding of my condition and the generally accepted medical view is that, in short, she is wrong. Very, very wrong.

Pushing against my illness is the ONE thing I should not be doing.  In fact, some might say its what has got me in this position.  Not that I would listen to that view either.  The notion that I can "control" my illness makes me very angry.  No-one would choose to experience this illness.  The effects of my illness are far-reaching and personally devastating. 

I've worked hard to complete a degree in my own time, whilst also working full-time and earning my own income.  I am now a qualified social worker and my main motivation for getting in to this line of work, was to help other people - support them, listen to them, give practical help, whatever it meant for that person to live more independently and inclusively.

Its strange, then, to find myself in such a lonely, sometimes helpless position.  No-one is going to give me a handout, or come round and give me practical help.  My illness or disability is not at a level where I believe I would qualify for any help.  Equally I feel I am a burden to my employer, colleagues and clients, as I am signed off on long-term sick leave, and therefore feel like a burden to society (a term I hate).  There are few reasonable adjustments that could be made in my line of work, or the environment(s) I work in.  At any rate work could not take account of the fluctuating nature of my illness, the changing physiological, neurological, and mental effects of it. I do not know in myself, where or when this illness will stabilise.  I won't even get started on the subject of recovery - since if I recover, how long might that be, and at what level? 

In summary, I would say I am caught between a rock and a hard place.  Normally I would fight my way out of a corner, come up with a plan to build myself back up, be proactive in getting on with things and pushing forward, but I simply can no longer do this with my "boom and bust" illness, even if I was well enough to.

I havent even begun to discuss more personal issues like the stigma I feel all around me (although that is covered in my post below about the sunny weather), and as a 30-something married woman what choices I might make about starting a family for instance.

Finally I don't write this for sympathy.  I don't want anyone's pity; I just want to be understood and listened to.  Because its only if you can really understand, that you can offer meaningful support.  Seeing someone who looks well, and drawing your own assumptions, can be really damaging.  And a plea to the government and benefits people: what is happening is wrong.  Genuinely ill and disabled people have enough hard decisions and labels made about them, without you adding to it.

"The Sunny Weather Makes You Feel So Much Better, Doesnt It?"

So said my neighbour to me the other day, after I hadn't emerged from the house for over a week, and with great emphasis on the better.  Knowing it was a rhetorical question, I just smiled and got in the car.  She obviously knows better than I do.

Despite my annoyance at the inferences of her statement, tt's actually something I have pondered a lot about.  I sometimes think to myself that yes, it does make me feel better.  Sometimes I wonder if I suffer from S.A.D. and I do feel a sense of "lightening and brightening" when the sunnier weather comes, like we are finally free from the bleakness and harshness of a long, cold winter.  I also have a lack of Vitamin D, the sunshine vitamin, so the arrival of sunnier days means I can top this up naturally.  Perhaps most significantly, the arrival of spring and summer, means I don't spend all day every day feeling cold and trying to cover up the slightest gap in my clothing, or wondering how I would get outside in the icy wind and slippery roads.

Yes, the sun's arrival is cause for celebration. It makes me happy to see the world starting to bloom again, birds cheeping and new beginnings all around.  I can stick shorts and a t-shirt on and I can sow a few seeds in pots, and spend time in the garden with my pets.  If I so wanted to, I can sit in the fresh air with a magazine and a glass of elderflower, or I can just simply put a hat and shades on and close my eyes, while listening to the gentle breeze and gently buzzing insects.  (Though usually round my way this is quickly replaced with the sound of shrieking kids, roaring boy-racer engines and electric drills).

But there are many downsides.  Not least the fact that, yes my neighbour saw me leave the house in my linen trousers and floaty top, carrying food to take with me to the family gathering I was about to attend, but this was the first time I had left the house in over a week.  And what we both didnt know, was that following the "exertion" of attending this family gathering I would go backwards and spend a week only going from bed to sofa to bed again, feeling rotten and in pain.  I can look out the window and see the sun shining, a beautiful blue sky, kids laughing in the street, people lighting barbecues, and my seedlings desperately needing potting on.  I think about all the lovely veggie summer meals I might cook if only I were well enough to.

And this is the heartache of M.E.  My family saw the old "me" - talking, and laughing, and enjoying nice fresh food, and playing with the little ones.  They don't see the me that is in bed much of the time, that doesn't do anything, that feels terribly ill and weak, that feels guilty, despairing, frustrated and sad.  No, they don't see that.

So yes the sunny weather makes me feel better, but there is danger in feeling better too, and when the sunny weather makes you feel worse, then the world seems a very cruel and unfair place.