The other night I was watching ‘Can you rebuild my brain?’a documentary about a young woman who suffered a massive stroke at the age of 34. She was looking at how certain treatments work on the brain and I found myself thinking, she looks well, it’s phrase people say to me. Someone in the programme said it to her and she said ‘there’s a lot going wrong inside though’, having an illness or disability which is invisible is tough. How are you? Has a whole new meaning when you’re outer self doesn’t reflect your inner self.
Since I’ve been ill, I have felt that I’ve had to prove that I’m ill on too many occasions and having to claim benefits and prove that I’m ill has been a degrading experience. Claiming that you have some form of disability, which limits your capacity to work means that you have to jump through a series of hoops to prove it. Firstly you have to fill in pages and pages of forms, then send accompanying evidence, then they will will contact your doctors, then you are most likely called in for an assessment.
The DVLA hold your driving licence at ransom; you have to prove that you can drive from A to B and they do this by asking your doctors, the same doctors who have to say if you are sick enough to claim benefits! I get that there has to be a system but when you are in the middle of it all, it just feels like you are constantly under scrutiny and being judged.
If you’re not in the benefit’s system, you’re not tracked and monitored in the same way, you don’t have to prove that you are ill. It feels like you have little control of what happens to you. I think that not being in control of your own body and life is what’s most frustrating; ‘before’ I was able to live my life, more less how I pleased but now it is controlled by hospital visits, tests, benefits I claim and if I fit into a particular box. My fight, is trying to adjust to my new life and its limitations and controls.