I’m a bit late on this (as I have been ill…) but this week until tomorrow is Schizophrenia Awareness Week. Rethink, the charity I’ve given talks in such places as the Houses of Parliament for, have produced this document to help raise awareness of the disorder. If you cannot be bothered to read the whole thing, here’s the bit about me:
I had just become a junior fellow at a university when I first became unwell. I started having lurid auditory and visual hallucinations, and became extremely paranoid. I saw, felt and heard things that were extremely distressing, and ended up being admitted to a secure hospital, where I was diagnosed with paranoid schizophrenia.When I was well enough to leave, I didn’t have any qualms about telling people my diagnosis, and that I’d been in hospital for the past three months. As far as I was concerned, there was nothing for me to be ashamed of – having paranoid schizophrenia doesn’t make me a bad person.But the reaction of my former colleagues was terrible. I was fired immediately, turfed out of my college accommodation, and barred from my university email and online profile. I wasn’t given any explanation at all, and my colleagues stopped talking to me entirely. They absolutely refused to engage with me because of my illness.That awful experience hasn’t stopped me being open about my diagnosis, and I have encountered some hostile responses from other people along the way. Recently, my landlord came around to inspect the flat, and asked me if I was working. When I told him I have paranoid schizophrenia, he said: ‘Oh, so you’re a druggie then’. I was really offended – I’ve never taken an illicit substance in my life – and was taken aback by his ignorance. I’m now worried he’s going to try and throw me and my partner out when our contract is next up for renewal, because he thinks my illness means I’m a drug addict.For most of my friends, the fact that I have schizophrenia is not a big deal at all, and generally they’re just concerned for my wellbeing. I know a lot of my friends through online social networks, and their support is very important to me.One time recently, I posted a comment on social media about finding it difficult to go shopping, as I was seeing zombies everywhere on the street. Those kinds of hallucinations are a big part of my condition, and something I have to deal with on a daily basis. Someone I didn’t know replied to the comment saying: ‘99% of people are scared of mental illness, so you shouldn’t talk about it – shut up!’Naturally I was very upset, so I went on Facebook and posted a message on my wall, asking: ‘Are you scared of my schizophrenia? Should I stop talking about it?’ The response was gratifying. So many people got in touch to say that they weren’t scared of my illness in any way, and that I shouldn’t stop talking about it because they care about my health.But there are other friends who are clearly uncomfortable with me talking about schizophrenia. I’ve noticed they become very distant when I’m going through a bad patch, and stop answering emails and phone calls until they think I’m doing better. It’s quite hurtful, but they obviously just don’t want to deal with the extremities of my illness.”
So you can see that I’ve had a range of responses to me being out about being a loony. i suppose the one that hurts the most is when, because people can see anything wrong with you, they don’t take you seriously and think you are a layabout just trying to avoid working. But I work, I most certainly work very hard.
Even on a good day, and sadly today is not a good day, I face nasty hallucinations, paranoid delusions, I can’t trust my senses to know what’s real and what is not, there is always a risk of a suicide attempt or self harm, I have to take mind-buggering drugs that come with an array of mirthless side effects, I’m often crushingly depressed, and so on and so on. My illness may be invisible, but it’s very, very real. When people belittle its seriousness it hurts and insults me and everyone who has to battle this illness..
Bon Courage, David, and let us hope that middle age will bring some respite. I must admit I used to hear the ‘slackers’ argument all the time but it seems much less prevalent now, even among Tories, so that must be progress of some kind. Of course anybody who’s had close contact with friends and family with such affliction understands that the idea is beyond absurd. I look forward to seeing you in fine fettle on Saturday and I don’t think anyone would object to a bit of madness should it also make the journey.
As a bit of a right-wing loony I’m rather appalled with what the government is doing with benefits for the long term sick. Although I admit there are some selfish reasons behind this. The idea is to weed out the ‘slackers’ who should be working when really the rate of disability benefit fraud is incredibly low. To do this they are reassessing every claim and expecting claimants to provide all the evidence to support their case. Not only is this a massive waste of time and money, it also puts an intolerable burden on the ill, particularly the mentally ill. When I last filled out a Disability Living Allowance form it took me a week of being stressed, crying and writing less and less coherently as it was such an invasive tome. Not only will the new form be at least as bad it’s me who has to chase up my psychiatrist, GP and so on for supporting evidence, even though they don’t know all the details of my life. Then I have an interview to justify everything I’ve written in my claim; the interviewers specifically under instruction to find reasons to deny claims rather than helping ill people. I may be OK in a social situation but when someone is grilling me about why I need help with, say, wetting the bed (which I do every time I fall asleep due to my medication) and demanding to know what evidence I have to support this (I suppose I could give them the previous night’s incontinence pad), I’m going to go to pieces and hide behind my teddy bear.
They will probably find I merit the same pittance, but it will have cost a stack of cash and cost me severe stress. It’s a colossal waste of time and money that only serves to harass people more in need of help than harassment. This conservative government has be lacklustre and feeble, much to my annoyance, but this change to the benefits system is simply terrible.
Quite so, David, it’s nothing less than evil. That is who they are, put simply. I used to have a more nuanced view, but no longer. It’s not done for economic reasons, because of course it makes no financial difference whatever. It is simply done to be nasty.
Oh! Thank you Tom! I was a bit concerned that my rant was based on the personal experiences of a career loony so I’m very pleased you concur it’s because the shits are being nasty in the empty name of ‘something must be done’.
I will not get my assessment for 18 months and I realise it’s impossible to know what will happen in that time (with me or the government), but, based on what I’ve been told by people who have been through the assessment process already, my anxiety levels are already raised.
My local MP Steve Brine has just been made a junior health minister, minister for mental health, no less (although quite why nut jobs need their own minister I’m not sure). I feel I should tackle him on the issue but I’m a touch scared as my paranoia shouts at me very loudly that my assessment date is likely to be moved forward dramatically. Paranoid schizophrenia, it’s such a bitch….
Contact him, David, and go to his constituency surgery if he has one. He may possibly learn something, which would clearly be valuable, and don’t be bullied, which is what this abominable intimidation is. I imagine you know his subject a million times better than he does and he needs your help.
I have nothing but contempt for the politics that preys on the most vulnerable.