Non-partisan UK-based Disability campaign. Advocacy for people with invisible illness and/or physical & mental health conditions. Also Carers, their Families and Friends.
Our individual voices are too quiet to be heard, but collectively we can shout loud enough to drown out this tide of abuse against us. Disability Hate Crime, lack of full legal protection, people in care homes costing too much to be let out and not one political party willing to fight for us.
Fourteen years ago I was a 21 year old in the prime of my life. I was cycling 2-4 miles a day sometimes and learning accounting skills. I worked hard all my life. At 13 I did morning and evening newspaper deliveries. I had started working as a cashier at 15 years old and would stay behind at secondary school studying after hours. I got four A's 3 B's and 1 C. I then did A levels. Then at 21 years old I took on a 14 hour shift for 2 days a week. Over a period of 8 weeks lots of strange things started to happen in my body. Intense fluish symptoms would appear weekly 3 days after the work and each week the symptoms were more severe than the previous. After 8 weeks I realised something was seriously wrong. As I tried to do activity my face would go pale with a chest pain and red itchy eyes forming. Then 3 days after I would be ravanged with sinusitis. I also got intense chills and feverish symptoms. 8 weeks previously I had been completely normal so I thought stopping the 14 hour shift would work. But my body carried on doing this and the amount of activity I could do became smaller and smaller. I soon became unable to get out of bed without the malfunction symptoms manifesting. I became hysterical. Every single day I curse those 8 weeks where I broke my body and made it unable to function correctly. The doctors told me they cannot diagnose ME until you have had the symptoms for 6 months. So for 6 months I got no medical advice and no diagnosis. Going to apply for benefits with no diagnosis is a joke. My diagnosis was 'debility' and my GP told me that ME doesnt exist. Finally after 3 months I was so ill from not getting correct advice on pacing and damaging myself that I was confined to bed. I had no choice but to move back to my parents house. Upon arrival I met a GP who knew of my condition and gave me correct advice and diagnosis.
During the previous 3 months out of frustration with my GP I looked in the yellow pages to try to see another doctor. I saw an advert which said GP gives 2nd opinion. I went to see this GP and he charged £20 per session. He held the appointments at a hired room in an alternative clinic. He asked me how can I help. I told him my condition and he procceeded to ask me lots of psychological questions. I told him that it is a physical malfunction I came to see him about. He said it was for the sake of thoroughness. At the end I said what do you think and he told me his diagnosis was agoraphobic. He was GP not qualified in psychology. I was outraged and told him so and unhappy to pay £20. On my way out I saw a man in the waiting room and told him that the doctor was a unqualified charletan. Afterall I had just strained myself and travelled OUTSIDE through busy city streets bustling with people for an hour OUTSIDE then an hour back! Then he tells me Im afraid of the outdoors!
So back to the story...I had got my diagnosis and advice. And the advice was to apply for disabilty living allowance. Since at this point I was bedbound and using a commode it seemed like I wasnt going anywhere fast. So I applied and they sent a doctor round. And youll never guess who the doctor was! It was Mr everybodies an agoraphobic! The unqualified psychotherapist who likes to toy with the idea that illness is all in the head. Perhaps he reads Deepak Chopra so he can sleep at night with a clear conscience. Anyway he didnt remember me but from the very moment he entered the room he started repeatedly slipping in the comment. "When Ive gone your going to be telling everyone 'horrible DR (name) has been round" I thought that was a strange thing to say. Anyway then we recognised each other half way through and it all clicked and I knew it was his job to diagnose everyone as fit to work. I carried on being polite but was feeling outraged. Then he went downstairs and I tried to summon my father to tell him but the doctor cornered my father. And of course I couldnt get down the stairs. SO after speaking to my father 10 minutes he left. My father who has a crooked walk but has worked full time all his life came upstairs and I said why didnt you come Ive been banging 10 minutes it was very important. He said the doctor had spent 10 minutes suggesting and counselling him on the idea that the fact he is disabled might have psychologically affected me to also claim I am disabled. I was seething. I couldnt believe it but I knew at the same time that they employ someone who is cold and brutal to refuse everyone their 1st application. And this 'doctor' knew he was horrible person and was reading these psychology books to ease his rotting heart.
Of course I appealed and I was recognised as genuinely ill. For 6 years I got worse until I couldnt chew my food, hold a cup to my mouth, or speak. Then I turned it around with an incredibly strict form of eating, no sugar no dairy no meat no fruit no oil no fat no alcohol, eating rice beans and vegetables for 8 years until I wanted to vomit. I already had to give up all my friends, no TV no music, no conversation, just staring at a wall all day. Food was all I had left. But to get better I had to give up my enjoyment of food and eat food I found disgusting. But it worked and now I can go out daily in my electric wheelchair. I got strong enjoy to lift my commode and throw it out of the window (ground floor). I bathe myself and can walk 50 metres per day and painfully slowly rising yearly.
I know they are going to send another Dr (blank) to tell me its all in my head even after 14 years of recognition. But I cannot switch my illness on and off just because they have no money. My body malfunctions ...period. I dont choose to be like this. I didnt suddenly decide it would be relaxing and fun to have my mother clean up my sewage because Im too lazy to go to the toilet. I didint decide to spend thousands of pounds on powerchairs and be celibate with no prospect of love, just so I can watch TV all day. Ive lost my chance to have children over this illness. I cry when I see 80 year olds who can walk further than I can, wheres the justice in the world. Ive been cheated out of the chance at life. Every week of the last 14 years I have wished I was dead. If we had voluntary euthenasia in this country I would seriously consider it. But rest assured I will not die. I will continue with this tortured lifestyle where you are deprived of so many things. I have a question for all the skeptics.
If this couch potato lifestyle is so cushy how come so many disabled people are commiting suicide?
The TV becomes painfully boring after a few years as do the other few activities you can do. Then you have no source of happiness and just wish for death. Being able to walk a few metres more each year is my only inspiration