I've been prompted to write this as I know quite a few people who, like me, have been hit with what to all intents and purposes is an invisible illness.
If you don't know what I mean, let me explain, using my situation as a template; I'm not arrogant or seeking sympathy - it's just that I know my own problems better that I can ever know anyone else's...
Up until August 2009, things were good. I ran the biggest hard dance night in the South East, and had spent 5 years building up other streams of income as a production crew member/stage manager for much bigger events. I worked hard, and in 2008/2009 my tax bill was over £6000. I declared everything I earned, and never hid a penny.Why would I? I'm a socialist at heart, and I fully believe in paying my dues; always have, always will.
In August '09 all that changed. I got hit with a chest infection that just would not go away. No matter what I took it refused to go. My GP finally decided that it was a virus; as this is the UK, no checks were run as to what sort of virus - I was just told that it would run it's course.
Well, it didn't - and it still hasn't.
After the coughing and wheezing stopped, I was left with absolutely no energy - to the extent that I became exhausted trying to get dressed - and after many weeks was diagnosed with "post viral fatigue syndrome". I was told it would leave in 6 to 8 weeks.
It didn't.
In October '09 my GP signed me off as unfit to work, through fatigue, depression, and anxiety. In September '10 I asked him to sign me back on again as I'd never had a penny in help or support from the DWP - they still think I'm making it all up - and I felt that I might as well try to get some work for myself if I could; it was obvious no-one else was going to help. A month or two after that I was diagnosed with fibromyalgia - an incurable chronic pain syndrome, which also causes persistent insomnia. On a good day I take 200mg of Tramadol. On a bad day, 3 times that...
That brings me to today. My club night is dead, my other work is about 20% of what it was, and I'm having to sell my home to pay off debts - not least because payment protection plans apparently don't count if you're self employed.
I have no idea what the future will bring.
But - if you look at me - I'm the same old Nick. I'll have a laugh and a joke with you, I'll try to get the party going, I'll always be there to help if I can, and I never mind going the extra mile.
And that's my problem.
My upbringing was such that I was taught to not impose on other people; to never be a burden; to make do; to fight on through and
never give in. Asking for help shows weakness, boy - do it off your own bat - that's the way....
And you know what?
Turns out that's the worst lesson I could ever have learned. Because in 21st Century society, keeping your head down, not complaining, muddling on through are the worst things you can do. You let the DWP know that you'll try to make it yourself and they very happily wash their hands of you. An advocate friend of ours said to me a long while ago "You have to understand that Government departments aren't there to help you - they're there to not pay you if at all possible".
I didn't believe him then; I do now.
So - in essence - what I'm trying to say is this: when a TV programme, a tabloid leader writer, or one of the Richard Littlejohn's of this world, rails against "benefit scroungers" or whatever phrase they're using on a slow news day - take a step back and think; perhaps about me. I look very well, most of the time. There are days when I could out-lift you easy in a weight contest. Catch me on a good day and my reactions are so fast, I'll deck you before your fist has left the cocked position. But those days are rare, very rare. Before Aug '09 I'd spend at least 4 days a week walking round town, distributing posters, chatting, socialising and generally building up my events; 8 - 10 hours a day, every week, rain, snow or shine. Most of the time now, I struggle to walk 500 yards - 300 if it's uphill.
But I
look the same as I ever did. If you're watching closely you might notice a limp, or a tendency to leave early, or the occasional use of a cane - but you probably won't, not least because I don't want you to. Why would I? I don't want to be a drain on your emotions or your wallet. I want to contribute - I always have, and I will always want to...
But, but...... I can't. I can't do any more than I'm doing right now.I'm pushing myself to the limit as it is. Every day is a bloody awful struggle to just do something, anything other than be trapped on the bloody sofa, too tired and too racked with pain or too out of my head on tramadol to even type... I hate myself more than a Florida dwelling Littlejohn every could.
And I'm not the only one who's life is like this; there are thousands of us. Victims of chance who refuse to admit defeat - but who get nothing for fighting back. We don't want to be like this. Do you think I'd trade in the life I had for a life dependent on whether or not some untrained clerk chooses to believe a diagnosis my doctors took 18 months to reach?
Do you really think anyone would?
If you do, you're less than human. Either way, try to be less judgemental; lots of conditions aren't visible; not all illnesses are obvious, and just because someone's not in a wheelchair, it doesn't mean they're not disabled.
But most of all, pray you never get a mystery viral infection or some other condition, because you could lose whatever you've got faster than you'd believe.
I know - and I can prove it.
