I’ve spent a week in bed. Chronic fatigue syndrome has outed its ugly head once again. But this was triggered by an adult social worker’s assessment. And I think it’s a bit people tend to forget, that every time I have to fill in a form describing my ailment, or have a conversation describing my ailments, or have an assessment describing my ailments, I have to relive trauma.

And it’s not terminology I use – ‘triggering’ and ‘PTSD’ and that kind of language – but that’s exactly what it is. When I collapsed on the street a year and a half ago, I was there for six hours with no assistance kind of staring at the OXO tower going ‘ha, this isn’t great, what do I do next?’

When I think of the years of life lost just being stuck in bed, being unable to do anything and totally reliant on, then thankfully, friends or girlfriends who’d give me the support I needed because certainly there was none coming form the state. I don’t particularly want to be remembered of those times, and I build my life story so I don’t. So the times I spent years in bed I used to watch DVDs and I’d watch Director’s commentaries, and it’s the reason I then went into film. Because I thought ah. instead of all that time wasted and lost, it could just be research, I can just embrace that time and turn it into something productive.

But when you’re forced to sit and go, ‘how often do you, how often are you able to get up?  How often do you fall over? How often does your life get curtailed by this disease?’ – you’re forced to remember all this, all this lost time, all those missed opportunities, the weddings I couldn’t attend, the birthday parties I couldn’t show up at, the christenings… just a whole lifetime of missed experiences. Now I’ve done tonnes in my life that many people would beg or borrow or steal to do, but it isn’t a tenth of what I had the potential of doing. And so I focus on the bits that I did do, and degrade and ignore the bits that I didn’t.

But medical assessments don’t allow you to do that, medical assessments force you to – and in this instance last week, for an entire hour – to just look at the negative, the bad, the disastrous, how terrible this condition is, how awful it impacts on your life, how devastating those moments are – I don’t want to do that, nobody should be forced to do that.  And of course the biggest irony was it was a trigger to cause the symptoms that I’m describing, including, ‘hey, stress is a really bad factor for this disease or disability’.

And I think it’s an important one to remember, every time someone gets dragged through an assessment, every time someone gets dragged to the DWP for a medical, every time someone gets dragged through a questionnaire for the adult services just to get assistance – than more often and not, what you’re asking us to do, is to remember every single disaster that has ever happened to us in our lives and write it down, or reiterate it verbally. 

Now, if you don’t have – or you’re fortunate enough not to have, any health conditions or disabilities,  just think about listing every single break-up that you’ve ever had with a partner, all through your life. And remembering all the pain and suffering each time that happened, and then do it for an hour, and then you’ll get a sense of what we have to go through almost monthly.