The Social Construction of Invisible Illnesses: The Sick Role

One of the first things to consider when looking at invisible illness is how society defines illness. Societies all over the world have a natural inclination to compartmentalise their members, creating order that is ideally intended to maximise productivity and optimise operation. So, members who do not fit neatly into the little boxes society prescribes become ‘deviant’.

Sadly, people with longstanding disabilities and chronic (and especially invisible) conditions fall into this ‘deviant’ category. I note here that the term ‘deviant’ is used purely in the sense that we deviate from the ‘norm’, and not because we are somehow criminals! Unlike other ‘deviant’ society members our deviance is not a choice, which is why the terms used in this 60-year old theory are somewhat lacking.

The Sick Role, first outlined by Sociologist Talcott Parsons in 1951, suggests that all members in society have rights and responsibilities, including those who are ill. When we become ill, we are given a temporary reprieve from our daily social obligations and allowed instead to rest. This is where we become ‘deviant’ from our societal roles. But this deviance is allowed in this instance, we are given a hall pass to allow us to take time out, to recuperate.

What this in itself implies, is that we are expected to recuperate in a prescribed amount of time. This time is dependent on the nature of the illness experienced – for a bad cold it may be socially acceptable to remain off work and absolved from duties for one or two days. For something more serious, such as during a course of chemotherapy for cancer, six months or more would not be considered excessive. It helps society to classify sick people, so that people can relate to them and their illness. Herein lies the problem – this theory does not take into consideration those who are permanently disabled and/or chronically ill. Illness is seen as a purely temporary state. This means that when your illness becomes chronic, there is no allowance made – you are still expected to ‘get better’ in a socially accepted timeframe.

For me, this has never been so brilliantly illustrated as by the case of my own ME. When I left school in November 1998 for surgery, expecting a 3 day hospital stay, recuperation throughout December and a return to school fresh for the January term I did not anticipate repeated major complications, combined hospital stays of over one month and not returning to school until some six weeks later than anticipated. Considerably weakened, and obviously still ill, it made me very angry to have people ask on a near constant basis “So, are you better now?”. I felt pressure to return to school, I wanted to see my friends, who were too busy to always come and visit me in my sick room. Did I really feel able to return? If I am honest, the answer is no. I simply felt pressure to conform and to ‘get better’ by returning to my former lifestyle. So when I was diagnosed with ME eight weeks after my resumption of daily life, I was again given a pass. In fact, the consultant who diagnosed me suggested I took a year off school – the ultimate reprieve from my social obligations. But that scared me too much, instead, with support from my parents I used my sick role status to argue my school down to letting me attend half days – at that point almost completely unprecedented. It was almost certainly still too much for me, but for the most part, people were sympathetic.

But over time, that little question started being asked again. People would see me on a rare outing to the shops, or my Mum would mention I had done something extra-curricular, “So is she better then?” It was infuriating and demoralising in equal measure. Once, a friend texted me to ask if I wanted to go swimming with a group of friends. I replied that it would be too much for me. “How about bowling?” She texted back, “Make an effort for once in your life!”

And that’s what it comes down to. When we are ill, when we are in the sick role, we are expected to work towards getting better. To be seen making an effort. For those on the outside it can look like we are sitting around doing nothing day in, day out, instead of what is more likely – a careful regimen of pacing and resting in order to maximise what little we can do. I believe this is why we so often get the “I wish I could stay in bed all day and not go to work” comments – because the sick role is temporary, people making these comments don’t stop to think that while they would enjoy being off work, they have the choice to return to work when they get better, or bored with their situation. For someone with a chronic illness it’s not a choice, and it’s not temporary. And so the chronically ill are seen as not working towards getting better, because they are not improving. And therefore they are again deviant, which leads to the stigmatisation and stereotyping (which I will save for future articles).

Because of this expectation to be healthy, to find a course of treatment and stick to it (yes, that’s what all those helpful recommendations for various ‘cures’ are all about), and to be seen to be doing something to get better, I personally began referring to myself as ‘recovering’ for many, many years. The truth was I had simply found a new baseline, one which allowed me to work part-time and sometimes have a bit of a social life, or study. I have had a very tenuous grip on this for the past 5 years, and I do still have some very bad days – my sickness record is probably shocking. But one thing I find is that by working 4 days a week, my colleagues see me on good and bad days, and I have been able to educate them a little, letting them know how delegitimising “but you don’t look sick” or “you look so well” can be. They can tell when it’s a bad day, notice when I am paler than usual, make me tea, send me home early. They can’t ignore it, because I am right there, in their faces, obviously feeling like crap. It doesn’t always work = this week I said I was worried I would catch a colleague’s cold and was told to just think positively and take some pills (I write this from the sofa, wrapped up, with tissues and tea to hand, because of course I caught that cold, and like every other chronic illness sufferer, a cold on top of everything else just makes everything so much harder!), but for the most part they are willing to listen and learn. I hope that one day that might be the case for everyone.

The sick role is definitely incongruous with chronic and invisible illnesses and disabilities, as is evidenced by the reactions of our society to those who suffer with them. All that can be hoped for is that as a theory it can evolve alongside sociery. I still have hope that one day I will feel able to publically say that I have ME, rather than my current line, which is to say I recovered 5 years ago.

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