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The Social Construction of Invisible Illness: Label me up!

A few weeks ago, I went to see my chiropractor. I’ve been seeing him for nearly 8 years now, and I absolutely swear by chiropractic. This guy helped turn me from virtually housebound, to back on stage, singing and dancing, within the space of 3 months, all those years ago. And I’ve not really looked back since.

So, the Saturday following my Fibromyalgia diagnosis I went along to my appointment, and as is usual for us, I updated him on my health, telling him about my most recent diagnosis. His answer was the same as pretty much everyone who knows me, “Well, it’s only confirming what we already knew for the past 6 years.” But he went on, “But don’t go labelling yourself now, ok?” To say I was shocked was a bit of an understatement. What is it with people on about me ‘labelling’ myself recently?

Help!  I have too many labels!

Now don’t get me wrong, I know that in some senses labelling can indeed be a bad thing, and something that should be avoided, especially when these labels are based on assumptions, prejudices and stereotypes. But I have always been of the belief that labels are in fact an undeniable fact of society and should be addressed and even embraced.

As I have mentioned in previous posts, society finds it impossible not to define us all based on certain criteria, and place us into nice little boxes. I’ve also already said that in that context, there isn’t really a nice neat little box for people with disabilities and chronic conditions. So we all have these labels. Some are acceptable – the acceptable labels I have? Mother, daughter, sister, Master of Science, employed, non-smoker and so on. Why is ‘disabled’ or ‘chronically ill’ not an acceptable label? Why is each one of my diagnoses not an acceptable label?

I tried to speak about this with my Mum, herself managing life with a chronic condition (Hypothyroidism). Surprisingly, she agreed with my Chiropractor! I tried to argue the point with her, that labels can be useful, and all the other labels we carry with us every day which are positive, but it was to no avail. Some labels are just bad, apparently. It didn’t help matters when I referred to myself as ‘ill’. I use the term ‘ill’ to collectively describe my conditions because they make me feel, well… ‘ill’ on a daily basis. Mum on the other hand, suggested that like her, I referred to myself as having ‘multiple conditions which [I] manage’. Whilst this is true, it’s a bit of a mouthful. And I have found that the second I say ‘multiple conditions’ it just invites comments and questions, “Well, what conditions?” It seems to me like it’s almost fishing for people to ask questions of you when you put it that way, because how, after such a statement, can you say, “I don’t want to talk about it,” without seeming rude and dramatic? I also tried to argue the point about invisible disabilities, to which my Mum replied, “There’s disabilities and disabilities.” I kind of got what she meant – her reference was to visible vs. Invisible disabilities, and severe vs. less limiting disabilities. Obviously I am in the latter of both categories, but should this mean I am any less entitled to support?

Apparently society thinks so. The label of ‘disability’ conjures up images of wheelchairs and canes, zimmer frames and stairlifts. It does not conjure up the image of what people see when they look at me: a young, single woman, who gets up every morning and drives her son to nursery and herself to work, then comes home, makes tea for her son, baths him, puts him to bed, and sits down and watches EastEnders with tea, biscuits and knitting. That’s essentially my daily routine. I do all that, I rarely deviate, because any more than that is too much. What I omit is the struggle to get out of bed in the morning, the leaning against the wall in the shower to support myself, the taking of medications at the correct times to hold off symptoms and pain, the naps – one when I come home from work, one whilst in the bedroom in the evening waiting for James to fall asleep, the fact that sometimes the tea and biscuits is my evening meal because I am too tired to cook. That’s the part that others don’t see.

In my mind, that’s where the labels become useful. They alert others to the fact that there is something else there, something not seen. When I suggested this to my Dad he agreed with me, “Labels help you to get the assistance you require.” Well put, Dad. I don’t think for a second that either of my parents think that I do not need more help than most people, nor would they ever deny my health issues in any way, but they see ‘managing’ you conditions in different ways. In my view, you cannot ‘manage’ your conditions without assistance, so labels are infinitely useful.

The problem is how labels are interpreted. For many, the label of ‘disabled’ is synonymous with ‘can’t’, it’s defeatist, giving up, useless. I don’t see it that way. I don’t think that I’ve said “I can’t” do something in years, not simply because of my health, anyway. I always try to find workarounds, different ways of doing things or using items differently to help me to carry on as normally as possible, within my limitations. I see disability as doing what you can, to the best of your abilities. I see that in people in real life and across the internet, we’re all just doing what we can, just trying to live. So why is disability such a bad label to carry? Again, it’s simply perception. People assume disability to be the wheelchairs and canes, it makes them uncomfortable. They don’t want to confront it in those with invisible conditions because that’s even more uncomfortable – how can you reconcile the two, a person who outwardly looks fine but they are telling you how much they suffer? And so many invisible conditions are ones that could easily happen to anyone. That thought alone is always enough to make people uncomfortable and even scared.

Personally I embrace my labels. I have recently discovered the joys of the hashtag on Twitter – by simply labelling myself with #EDS I have found more people with Ehlers-Danlos Syndrome to interact with, share experiences and symptoms, and seek reassurance from than in the whole 7 years since my diagnosis. Label yourself as a #spoonie and you’ll find others with other chronic conditions who can also sympathise with you. Interacting with people, normalising my experience, has been fantastic. It always feels so good to say, “Hey, me too!” and not feel like such a freak of nature. For once in my life, I fit in. How can that be bad? Until I got my fibromyalgia label every request I made for pain relief was denied, and I was treated as a narcotic-seeking junkie. Within minutes of my Fibromyalgia being diagnosed I had a prescription in my hand. When those pills didn’t work for me I saw my GP, explained the problem and left a few minutes later with a new prescription for pills that this time do work well for me. A simple label, one word, got me the pain relief that I have needed for over 6 years. How could that possibly be a bad thing?

My labels are badges of honour. I wear them with pride because every day they help me. They help me to get the help and support I need, and they help to remind me of all my achievements, no matter how small. Because everything I achieve with those ‘bad’ labels in situ, is even more of an achievement. My labels keep me going, because I want to prove that I can be more than society suggests I can be with such labels in place. I want people to know those labels are there, because how else can we break the stigma surrounding them? You have to label yourself to prove you are more than that label.

2 Responses

  1. Labels are tricky. There’s a poster that says ‘Labels are for Jars’ and to a great extent I agree with it. However, they’re useful and if I get to pick the ones that are used to describe me I tend to like them.
    For me, what’s most important is any value judgment attached to the label for me or the public at large. That’s why a label (or dx) of Fibro or ME/CFS can be hard. There tends to be a negative connotation of ‘fake dx’, ‘lazy’, ‘malinger’, ‘junkie’, etc with those labels. All I can do is hope that by owning the label and living my life I can show people that those negative connotations and value judgements aren’t warranted.
    Still, the shorthand is essential. I’ve found friends and support I never would have found otherwise without putting these labels in social network profiles.
    I’m quirky, have EDS, live with a cat, am wonky, have fibro, am a geek, am legally blind, etc etc All of these things are pretty integral parts of me and I wouldn’t be ‘me’ without them.

    • I think this was primarily what I was trying to get at, and I will expand upon at a later stage. The whole thing about social construction of anything, is that it doesn’t just exist for the people who experience whatever the phenomenon is, and the value that they attach to it is not simply accepted by those outside of the experience. Instead there comes a hugely complex set of values and judgements associated with the labels, from everyone, which socially constructs what its meaning is, regardless of personal experience. This is something I aim to cover in future posts on the delegitimation and stigma associated with chronic illnesses. Thanks for your comment!

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