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Learning to live with chronic illness without independence

Recently I failed a PIP appeal. I get standard rate mobility - which at one point the Tribunal were minded to take away - but was appealing for at least standard rate daily living, if not enhanced rate in one or both components. The Tribunal essentially ruled that my choosing to manage my condition by reducing upright activities was a lifestyle choice. Presumably I should sacrifice my religion, community and family in order to avoid paying someone to help me at home.

I could have told the Tribunal panel that I have had to learn, from painstaking experience, that if the thought of doing something makes me want to cry then that is my body’s signal to me that it is too much and I have been doing too much. So yes, at one point I got up to 20mins cycling on a fixed bike. But I also ended up miserable and unable to sustain that activity. And I’ve had times of trying to build up since, but I’ve struggled with periods of busyness that have precluded exercise, or other life events – like benefit assessments – have made me too ill to manage exercise.

I didn’t say that because I was afraid of being labelled hysterical and even more ‘lifestyle choice’ than before. It’s very hard to tell people that you’re struggling with the level of exercise you’re doing and it’s making you depressed. What kind of pathetic, must-try harder type of person gets depressed by exercise? If no-one got out of bed or went to work or ate healthily or did exercise unless they really at that moment felt like it, we’d all be in bed until we starved, at which point it would be too late to do the work to earn the money to pay for the food we need to eat.

So how do I convey, in a way that you will understand, that if I push myself once to do something that makes me want to cry I survive but with a minor psychological wound, but if I keep doing it then I am acting as my own slave-driver and if I genuinely never let up there will come a point where suicide is the only way to escape? If you won’t let me be a kind taskmaster looking out for the wellbeing of my body and mind, if you force me to be my own worst enemy, I will not survive.

I was a slave-driver once during fieldwork for a PhD. I spent four or five months feeling myself causing psychological damage that I knew would take years to recover from. I just didn’t know that I had a physical genetic condition that meant not only could my body not handle what normal people can do, but I was breaking it even further by trying to make it do so.

After I left the PhD I spent three years vacillating between trying to do the responsible thing – look after my body and keep within my limits – and trying to do what the world said was the responsible thing, which was to gradually and yet relentlessly keep on building up how much activity and exercise I did until I was back to normal. Sometimes the taskmaster could hold back the slave-driver; sometimes she couldn’t.

I had a remission in 2014 following prayer for healing. A number of people had previously prayed for me but this time was different. My pain went and my flu-like symptoms went, and I could exercise and engage in activity without causing symptoms to recur. The ‘graded exercise’ ‘worked’ because this time I was superficially healthy and just building up my exercise levels like anyone else trying to get fit would do. It worked not because graded exercise cures ME, but because once I didn’t have an ME-type illness I could build up my exercise. I got to the point where I could run six miles and go further by mixing walking and running.

But it didn’t last. The pain started to return. The wobbliness came back. The flu-like symptoms recurred.

At this point the advice is to cut back and find your baseline – the activity you can manage without symptom exacerbation – and build up again from there. So I cut back. And back. And back. And still I was getting worse.

I stopped running. I stopped driving to work. I stopped helping out with the youth group at church. I reduced my visits to my gran from three times a week to two. And I was still getting worse.

I stopped walking. I stopped driving at all and took sick leave from work. I stopped going to church. I visited my gran only once a week.

It broke me. It broke me to have regained function and then not only lost it but ended up worse than before. It broke me to have to stop helping others through work and church, and to be only able to visit my lonely gran once a week.

I tried to restart some work and I tried to exercise. I went on a three-week pain management course, the very best the UK has to offer, and it changed nothing. I made a three-month plan with my OT and physio from the course, and I couldn’t keep to it. I was still being the slave driver in line with what society and the medical profession and the benefits system expected of me and I couldn’t get out of that way of being fast enough to cope, and I attempted suicide.

My brain then panicked and decided maybe it could live a little longer, so I sought help, was taken to the resuscitation ward, and survived.

A couple of months later I resigned from work, even though I’d been doing at most four hours/week over the preceding year. I learnt that I really did need to listen to my body and that it wasn’t responsible to push past the point where I wanted to cry. I learnt that even if I didn’t care for myself, I still cared about the impact on my family and could use that as my main driver for being truly responsible.

I also learnt that I desperately don’t want to go back to that misery again. And if that is ‘fear avoidance’ then so be it. I don’t think it is unreasonable to be afraid of putting your hand into boiling water or picking up a burning coal or hitting your head against a wall or standing on the tail of a venomous snake. These are all entirely rational fears that keep us safe.

The problem that I and people like me have is that doctors don’t believe that what we have learned from experience – that too much activity will harm us – is in fact true. They think we have an irrational fear avoidance that needs to be trained out of us by making us do the things that we know from our ongoing personal experience make us more ill. So we do these things and we become more ill and we end up in sullen, aggressive or hysterical messes depending upon our personality, at which point we are labelled an uncooperative patient whose only problem is his psychological response to therapy and who really therefore needs to be told and made even more strongly what to do. The idea that doctors might listen to and even believe the words their patients are saying is anathema. The consequence is multitudes of lives lost to misery, illness and destitution when the remedy was in our hands all the time.

We had a welfare state once, and it was successful. It lifted people out of poverty and illness. It created full employment and decent housing.

We can do it again, and we don’t have to drive anyone to suicide to get there.

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