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The Social Construction of Invisible Conditions

“But we can’t make assumptions,” I said, pointing my pen in hope of adding weight to my point, “What about the disabled? What about single mothers?”

Inwardly I cringed, now it was increasingly likely that the other 49 people in the lecture hall thought I was a disabled single mother on her soapbox. It wasn’t true at the time, but it’s strange where you end up.  Apparently these were the questions that the lecturer wanted to be asked. I don’t even remember what her original point was, but it was the first lecture I had had with this wonderful lady, who I found terrifying and wonderful in equal measure, and I wanted to impress her. Thankfully, my questioning singled me out, and when I approached her and asked her to become my supervisor she was only too happy to oblige. So began my love affair with the discipline known as Social Constructionism.

Social Constructionism is the psychological/sociological approach that holds that objects develop meaning through their social contexts – that concepts are defined by how our culture reacts to them. It is also known as Critical Social Psychology and Feminist Social Psychology. From the beginning I felt that this was an ideal way to examine ME in our society, because it is often defined in different ways depending on which group is approaching it.

Naturally my ensuing project used this approach when examining how young women discursively constructed their experiences of having ME. What emerged was an extremely eye opening experience for me. Whilst the general opinion of people with ME/CFS/FM and other related conditions is often portrayed in extremely negative terms, and the typical sufferer as someone who is lazy, scared, depressed or angry, what people with these conditions wanted above all else was a fairer portrayal. Interestingly with a move away from the focus on the severely affected, because whilst this is excellent for the shock factor in raising awareness, it does not help the sufferers who are more likely to be encountered in society – ie. Those who are well enough to work, study or just socialise. This can lead to Joe Public formulating opinions that these people they encounter are not really ill, or worse, that the people that they read about or see in the media are suffering from something that is indeed “All in the mind”. Not a helpful situation for any sufferer. This can exacerbate the stigma already associated with the condition, perpetuating the stereotype of the ‘malingerer’. And with this stigma comes a phenomenon known as delegitimation – where illness experience is questioned and the legitimacy of the condition loses ground rapidly.

What to sufferers do in this situation? Interestingly, those I have talked to say they just stop talking about it. I can relate to this, for years I referred to myself as ‘recovering’ when talking to people. This seemed to give me breathing space to answer any questions because they were then phrased in a way that made them not about me. I could talk about “Others” and not have to say “I”. Even when the experiences I described were my own, it took the sting out of the tail at least a little. Gradually the questions ceased, throwing others a bone called ‘recovery’ apparently satisfied the attitude that I was ‘doing something’ to ‘get better’ when the truth was I just stuck to my known limits and didn’t really ‘recover’ at all.  And then one day I just didn’t need to talk about it anymore.

It was these experiences, knowing that what I thought, felt and experienced was shared, at least by a handful of others, that made me want to start Visible Invisibility. I wanted to bring it to the forefront, that there is more to Invisible illnesses than what the media chooses to show us (If you will excuse the pun there!). I wanted to change the way that people relate to people with invisible conditions, including how people relate to themselves. I have found a great deal of strength in focusing on my abilities rather than my limitations, and empowerment has helped me cope far better than any drug or pacing ever has. It is more than positive thinking, it’s about taking as much control as you can, even when there are some elements that you are just never going to be able to control.

I am planning to write a series of posts on various aspects of the social construction of invisible conditions. Obviously the focus at this point will be on the multiple invisible conditions that I personally experience, but I welcome contributions from anyone who has a different experience. It has to be said, that sometimes the things that I say may seem unpalatable, part of my silence on the matter for so long has been that I am fully aware that I do not always hold the same views as the majority of people. But I am willing to risk it now. I invite constructive criticism, I want debate. I feel that this is the only way things are going to progress. Everyone deserves a voice, not just the most ‘media friendly’ cases and if that makes for uncomfortable reading at times, I want to examine WHY it is uncomfortable.

Perhaps then we can deconstruct invisible conditions as they currently are, and reconstruct them how we want them to be.

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