Do Not Stop Taking Your Medication / 20 July 2011
I’ve just stopped taking my medication. Five days ago as I write. I see it as an act of self-preservation rather than an act of self-harm. I’m struggling with my mental health. To be honest, it feels like another man inhabits my body and controls my life, while I am a spectator with no power to intervene.
Because I’m in this place, I’m taking anti-depressants. I have all sorts of anxieties about social occasions but like where I live and feel safe there. To go anywhere further is a push. I’ve felt a stammer coming on, a hesitation at the start of words, a voice that isn’t my own. My mouth is swollen; my lips sensitive. Hot drinks make me sore on the roof of my mouth.
Try fitting those first two paragraphs into the ‘Limited capability for work questionnaire’. It is a tick box form designed to deny people benefit when they most need it. I filled in what I could, and then went to see a volunteer who specialises in helping disabled people fill out forms. He had a book that gave the four possible answers to the questions they asked to assess my mental health, and gave the score values for each answer. I need 18 points, I scored many more by dancing through scenarios that put the fear of god into me and letting David write them down as he saw fit.
Next I’ll be called to Atos Health Care. There’s a scandal waiting to be told. Last time I was questioned by a pleasant nurse who typed my answers into a computer, and guess what? Computer says no. But they saw no reason to inform me my benefit had been stopped. I was opening post in sporadic bursts, when I could dare to deal with it. Paperwork is both daunting and stressful. I found out just before my overdraft went overdrawn. I was fucked. In shock I emailed my MP, filled out an appeal with David’s help, went from £110 a week down to £65, before a woman called from the benefit office and apologised for not informing me they had stopped my benefit. "Where did you send your appeal to?" she asked. "Luton! Oh that’s a shame. We need it in Milton Keynes." Eventually I readily agreed to £95 a week, and to keep taking the tablets.
But on the ‘Limited capability work questionnaire’ it asks what medication you are on and what side effects they cause. So for the first time ever, I got out the patient information sheet for each of my 3 HIV medicines, and my anti-depressant, and looked through the side effects and underlined all the side effects I am suffering. Two of the HIV meds and the anti-depressant include the side effects of anxiety and depression.
I’ve come off my meds because I feel the desperate need to reconnect with my undiluted self. While I’m off my meds I will be monitored and I will I’m sure return to medication at some point. People with mental health difficulties are being dealt with appallingly in this country. Despite the craziness going on in my head I have been working very hard to create a living for myself, setting myself up as a self employed poet and artist, something I can do from home, and in fits and starts when I have the energy.
It is a myth to say there is support for people to get off benefit. It’s all stick, and more stick. I need help with accounts. Get software they said, it’s very easy. Not if you find paperwork daunting. I found a lovely lady who does accounts for me for a very reasonable sum. They told me I needed a website. They couldn’t help me make one, or give me any money towards getting one made. I tried to learn web design just to please them, enrolled on a course of 6 sessions, left after two. It was torture. The lovely lady knew a very nice man who makes websites at a very reasonable rate. I need help to fill in funding applications. They offered me websites to look up and tasks I knew I’d never do before they’d finished telling me. The lovely lady does funding applications too. One day one will come through.
There’s a myth that needs to be axed. Yes there are tablets you can take if you are HIV+, and yes they’ll probably keep you alive. But not everyone gets away without side effects. In some cases they are very serious. I have found it impossible to adhere to my drug regime, deal with the side effects, and battle the benefit system.
GPs and consultants need to speak up loud and clear for patients incapable of doing so themselves, and the benefit system needs to be less of a punishment. If there’s a support system out there, I’ve yet to discover it! Bring on the mental health buddies.