London, April 2011. It is unseasonably warm. It is early on in my sick leave, and I am becoming more and more depressed. I am sleeping for longer every day, and spend much of my time staring out of the window at the tree on the other side of the road. I am growing increasingly withdrawn and starting to find speaking to people – any people other than my own family – terrifying. Now and then I do go out into the sunshine, but I choose places such as large parks and neglected footpaths where I think I can avoid being near people. In this context, meeting a friend for a fairly impromptu picnic is a significant positive event and one I hope will be good for us both (she, too, has serious mental health difficulties; indeed, she meets straight after an appointment with her psychiatrist). Out in the park, the sun continues to shine. The food is good, despite the lack of attempt to co-ordinate who brings what. Toddlers go by on scooters and dogs frolic in the fountains, scaring the ducks. My friend is excellent and supportive company, as she will continue to be all year long. Despite our respective clinical depressions, we are pretty damn close to actively enjoying ourselves. Except there is an edge, because we can’t help worrying: what if we are seen? We are just a ten minute walk from my office. What if a colleague (or worse, a manager) cuts through the park and sees us? See us in the sun, sees us eating a picnic, sees us with our shoes off and our feet in the grass? Surely their first thought would be: Ha! I see she doesn’t look very ill! Even though my friend works an hour’s commute away, she is not immune to the anxiety; people know people, word gets around, other people who work where she works live out here in the suburbs.
The really sad thing about this little story is that my friend and I were right to be concerned. These days, the world is on the lookout for sick and disabled people who aren’t sick and disabled enough to deserve the sick pay, sickness benefits or disability benefits they receive. I typed “benefit cheat” into Google, and the first hit I got was Crimestoppers, a charity which encourages the public to make anonymous reports about people they suspect of being criminals – including benefit fraudsters (“Tell us what you know, not who you are”). Three links to the DWP come next, which take you to an online form asking for details about the alleged fraudster, including their appearance, and that of their partner, and where they and their partner work. The form states: “The information you have provided is strictly confidential. You do not need to tell us who you are, but if you would like our investigators to be able to contact you for more information, please tell us.” If someone reports you as a suspected fraudster, there is no way of ever knowing who made the allegation against you.
The news stories abound: the woman from Staffordshire with supposed back and mobility problems who was discovered running 50 events in just one year of athletics club membership; the Lincolnshire woman with arthritis who claimed DLA for care such as washing and dressing, but was then found to be working as a supermarket cashier; the Salford woman with sciatica which she stated prevented her from cooking and walking, but was revealed to be working as both a cleaner and a machine operator; the man whose syringomyelia reportedly caused him severe neck and spinal pain but was able to win one race and coming in third in another in the British Motocross Championships. In all of these cases, it was accepted that the offenders (and I use this term in light of their convictions) had at one point had genuine claims based on real disabilities but were guilty of failing to notify the authorities that their condition had significantly improved. In the stories outlined above, it is clear that the claimants had long passed a point beyond which could expect to legitimately receive the levels of benefit they continued to claim. But how many of us worry which side of the line we are on? Are we still ill enough to justify being on sick leave, rather than working part time? Are we still deserving of ESA, or should we be on JSA? Is a current improvement in symptoms long-term remission, or are we right to hold onto the care component of DLA in case we deteriorate again quite suddenly?
For people with fluctuating conditions, this kind of judgement call can be on-going. Annunziatina Attanasio was recently found guilty of fraud after being captured on video walking normally and enjoying water slides on holiday in the south of France – she was claiming the highest rate of the care and care mobility elements of Disability Living Allowance for severe back problems. Attanasio’s barrister argued that “she did have good days and the video took place in a climate which was warmer. Her back disability was significantly improved on that holiday… when the hot weather eased the pain in her back.” The jury did not accept this, and indeed watching the footage it is very hard to not to feel that Attanasio was claiming benefits that rightfully belonged to others with genuine needs. But still, as someone with a fluctuation condition which moves through different phases, this kind of story frightens me. I am being paid by my (public sector) employer because I am sick. Sometimes I am very, indisputably, sick. But at other times I am less so. When I am hypomanic I am definitely, from a medical point of view, unwell. Yet anyone observing me socialising, shopping, talking nineteen to the dozen, and staying awake blogging feverishly, would be forgiven for thinking that far from being ill I appear to be having the time of my life.
Over the past few weeks, I have had a number of OK days. In terms of Christmas preparations and social engagements, I haven’t been able to maintain the pace of previous years, and I have had the feeling that everything I’ve done has been a Big Deal. But yes, I did manage to go shopping in Oxford Street. Yes, I did go to a party and dance (to an astonishing 3 songs). Yes, I had a couple of glasses of wine with my cousin. And every single time I have done something like this – stuff that in previous years I wouldn’t have thought twice about– I have worried about whether I should mention it on Twitter. I have a public account, after all; anyone can read about what I’ve been up to, including colleagues and employers. In reality, I know full well that it would be ridiculous to suggest that going to one party and visiting my family at Christmas in any way negates or outweighs the rest of this episode. Two weeks of restrained and relative wellness don’t cancel out 17 months of drug side-effects, inability to care for my kids, nightmares and panic attacks, hallucinations, ongoing inability to sleep without drugs, and self-hatred and suicidal urges. Do they?