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Sickbed revolutions: personal perspectives on radical healthcare

August 10th, 2010 · post by Fred Goodsell · Make a comment

‘Illness undermines our ability to live as we wish and our ability to challenge the conditions that make us sick’ – Why Society is making us sick by Tash Gordon and Becs Griffiths

I am sick again….again.

This seems to be a reoccurring facet of my life. Most people probably don’t know what it feels like to be envious of someone else’s immune system. But this is not the worst I have felt and I am getting used to it now.

Three years ago I was a doctor informed me my symptoms were undiagnosable. This so called ’specialist’ in ‘cases like mine’ told me “We see alot of people with symptoms like yours. We don’t know what the cause is but it’s unlikely you’re going to die”. I now wish I had told him, with a smug look on my face ‘We all die someday Doctor’ because I think that would have made me happier to be there.

My symptoms started in November 2006. A standard bought of the flu which kept me in bed a week or so. Then I started to get muscle pains in my legs. This provoked the first of many trips to the doctors where I was told it was likely I had tendentious and that I should get some better shoes (apparently Converse are bad for your feet).

So I rested and got some stupid shoes I hated but the pain remained, in fact it got worse. New symptoms started to manifest. I found myself experiencing waves of intense tiredness, to the point I would no longer be able to focus in conversation. I had a constant sore throat and could no longer stand for more than half an hour without needing to sit down. My concentration was shot to pieces and I got regular headaches. I felt like I was falling apart.

Another trip to the doctor. This time the doctor I saw could not have seemed less interested in what was wrong with me. I was told I should have blood tests and words like ‘fatigue’ were mentioned. My attempts to make further inquiry were met with half-hearted responses. I left feeling scared and alone.

At this point my symptoms were taking serious effect on my daily routines. At first I tried to keep living a normal life. Maybe too normal. I was going out with friends, attending protests, spending time with my partner at the time and participating in a full time university course. I remember returning home from a No Borders protests and the pain being so bad, I burst into tears.

I began taking more and more time out from my university course. Meaning I fell badly behind. My tutor was unsympathetic at best, demanding to have a written doctors note explaining my symptoms which I had to pay for with my own money. The times I could attend I felt completely overwhelmed by what I had to catch up on, confused by what I had missed and thoroughly unsupported. So I dropped out. I quit my job and lived off my student loan (that I was supposed to be returning).

The emotional effects of my illness started taking effect. I was scared. Scared I was never going to be 100% well again, scared that I was losing control of my life and scared that I had no idea what was wrong with me.

The blood tests came back with nothing to show. Retrospectively this may have been a positive thing but at the time I just wanted an explanation for what was happening to me. Our culture teaches us to look for quantitative or scientific explanations for every facet of life. We are conditioned to rationalise everything around us and I wanted to be able to do the same thing with my illness.

I have remained in this state of unknowing; but thankfully after a year my symptoms subsided. I was left with a tattered immune system, something I still have to deal with and occasionally if I’m under the weather or feeling low some of the symptoms resurface.

It’s my hope that when we share our stories of suffering with each other it can provide new insight into how to build stronger communities. Around the point I first got sick I was beginning to involve myself in radical and alternative communities and found that attitudes to sickness both inside and outside these communities lacking in understanding, adding to my stress levels and ultimately hindering not aiding my recovery. It wasn’t unusual to hear ‘What! You’re sick again!’ when I tried to explain why I wouldn’t be able to attend a social event. Whilst we strive to develop new ways to deal with accountability and community living it’s important that health and the surrounding issues are not forgotten because they aren’t considered radical or key to a revolutionary struggle. Otherwise we risk endorsing a revolution of the healthy and able.

There are practical things we can change about our behavior towards people dealing with long term health conditions. Each of these will be different depending on individual circumstance. The age old Anarchist phrase ’solidarity not charity’ is key here. We can look for ways to extend solidarity to those suffering simply by asking if and how they would like our support and being respectful and understanding whatever the response. At the same time we can take responsibility for our own health by educating ourselves, learning new ways to boost our immune systems, stay fit, cook healthy food, examine and learn about our bodies and look into alternatives to the current centralised and drug happy healthcare system when we do get sick. And the great news is none of this has to be done alone. There are already radical health collectives based around the world and if there isn’t one near you why not start one yourself?

But it is important to highlight that the real fight for our health is part of a greater struggle for our personal freedom. It may or may not come as a surprise that it is not the richest, but the most equal nations that are healthiest. The industrial consumer capitalist society and the exploitation we experience in it are at odds with a healthy existence. The amount we are forced to sell our time in the workplace, the education we have had, housing conditions, diet and many other social conditions greatly effect our bodies ability to deal with sickness. The alienation we experience as we grow older can hinder our ability to talk about these personal issues for fear of being perceived as weak or fragile.

We can begin to confront these issues now by developing autonomous healthcare within our communities, taking control of resources and information that has been turned into a specialist subject to be applied only by ‘experts’. We can share new skills with each other. We can strike or go slow when the conditions in our workplace become unbearable and we can show solidarity with those unable and unwilling to act out ’social normalities’ such as 9 to 5 jobs, patriachical relationships or surviving on a low income wage as well as many other aspects of a culture that imposes strict social hierarchies on our lives, and in tern damage our health.

I hope this article can go some way to opening interest in the issue of revolutionary health issues so that next time when someone asks ‘What would healthcare look like in your ideal world?’ we can respond with real life examples of people reclaiming their lives and feeling empowered through a happy and healthy existence.

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