Chronic Illness and Body Image

It’s a topic I’ve been wanting to write about for ages: the impact of having a long term medical condition (in my case, epilepsy) on my body image and self-perseption. Well, now I’ve got me a blog, and I’ve got the time to write, so here goes!

At Diagnosis

I was diagnosed with epilepsy at age nine, after a major seizure while I was playing the piano. One minute, scales. The next minute, bang, Catherine’s on the floor! The onset and diagnosis felt very sudden at the time- I went from being a pretty regular kid who had their fair share of bumps and bruises, to having to undergo all sorts of tests and assessments, and try a seemingly never-ending combination of drugs in the hope of ‘controlling’ the seizures.

I remember a couple of strong feelings from this time. The first was a sense of shame and embarrassment that my body was ‘playing up’: epilepsy is not generally a genetic condition, and nobody else in my family has it. Prior to diagnosis, I was a very ‘good girl’, independent and responsible. My parents- who had three children (including me) and a fairly unstable relationship- suddenly had to worry about me, and attend to quite serious medical needs for me. I remember constantly feeling like I was making my parents more stressed and unhappy than they already were, and feeling very guilty about this.

The other thing about epilepsy is that- like many neurological conditions-  it’s a bit of a guessing game to treat. The brain is such a complex, individual bundle that you can try drug after drug, and none of them will work. Or they might work for a while, then stop. Or (commonly) the drug might be fairly effective, but any benefit is overridden by horrible side effects. I felt like the epilepsy had taken away any control I had over my body, and I was at the mercy of the condition (and of doctors and their many drugs/ side effects).

I can look back now, over ten years on, and see all the warning signs: Shame. Embarrassment. Guilt. Lack of control. Mistrust of my body. And smaller things, like having my weight mentioned more than ever before (to calculate drug doses, to see if I was growing ‘normally’, on every form for every new doctor). My autonomy over my body was frequently taken away and given to others: doctors who rarely spoke to me but talked over my head to my parents instead, nurses poking and prodding, machines taking readings, drugs having all sorts of impacts and seizures which would not be tamed.

I think the hardest thing about being a child with a chronic illness is that nobody ever took the time to explain what was going on; to clarify that this was a medical condition with a random cause, not a personal slight on my character or something that I could control by being ‘a good girl’. I was treated at a specialist children’s hospital but I never once remember being spoken to directly, or asked if I understood what was happening. Nor was there any effort made to see how the diagnosis and illness was impacting on other areas of my life, like self-esteem or coping at school.

After the epilepsy diagnosis at nine, I was beginning to hoard and binge on food by ten, and had started vomiting and laxative abuse by eleven, which would eventually progress into full-blown bulimia. Is this trajectory purely a result of the epilepsy? Of course not, there were plenty of other contributing factors. But, I do believe that those feelings of my body being ‘wrong’ and ‘out of control’ that arose with the diagnosis- alongside no effort by professionals or family to ever challenge these thoughts- had a big impact on what has happened since.

What it’s like now

I still struggle with the reality of having a body that is not under my control; and that in fact is frequently totally uncontrollable. Seizures are random events that can- and do- happen at the most annoying times. Important meetings, a gig I really wanted to go to, a close friend’s birthday- epilepsy doesn’t know or care about these things. Epilepsy doesn’t care about making you look like a drunken fool on the train, or causing you to fall asleep in public and expose yourself to danger.

I feel a great deal of shame, and expend a lot of energy worrying about what people think of me. Do they think I’m lazy or rude or unreliable, when I don’t turn up to events because my body’s just not up to it? Do employers look at me as a liability because I can’t drive? Do I really deserve support from the government, in the form of a disability support payment? This extra layer of shame/guilt/worry sits on top of an already rather full ‘internal voicemail’ that picks apart and criticises how I look/ walk/ talk/ act as a fat woman.

I also have the ongoing battle of trying to educate neurologists and other epilepsy specialists about my co-exsisting conditions of depression, PTSD and disordered eating. All anti-epileptic drugs have a depressive effect, and many cause increased suicidal tendencies. Some take a few hours to absorb, or only work if taken with food, which becomes problematic if I’m fasting or purging. Many a neurologist has looked at me with disdain, as if to say, ‘Stop your terrible behaviours at once, naughty little girl!’. Well, it’s not as simple as that, buddy. And the drugs you’re asking me to ‘try and see’ may not be helping, either.

Epilepsy can be isolating and frightening- despite it being a rather common condition statistically, I know few other epileptics, and many people say I’m the first they have met. Having to ‘out’ myself as epileptic, to explain the first aid procedures, to combat the myths and stereotypes- NEVER stick a spoon into a fitting person’s mouth!- can be exhausting. When I’ve already got an internal voice telling me what a fat stupid cow I am, having to stand up in front of a whole room of people and expose another vulnerability can be…challenging! Or downright painful, depending on the day.

At the same time, I value the relatively high level of freedom and independence I have, in spite of the condition. I live independently, I work and support myself, I go out and have fun. I get dizzy and fall down and then get right back up again. I have a voice that I can use to advocate for myself, for others and for the epilepsy community. Sometimes I have to work hard to remind myself of these positives, but they are there and I am grateful.

Ending thoughts

I feel like this post has been a massive rant, and yet there’s a lot more I want to say on this topic. Maybe it’s something to revisit during this year. However I’m glad to have made a start at mapping out how these two aspects of my life- the chronic condition I live with, and the way I perceive myself and my place in the world- intersect and impact on each other.

The image above is from the wonderful tumblr ‘Chronic Illness Cat’ and gave me a giggle when I searched ‘chronic illness + body image’ on Google.