Epilepsy and me

There’s something I have in common with Agatha Christie, Truman Capote, Richard Burton, Alexander the Great, Julius Caesar and Napoleon Bonaparte, not to mention Vincent van Gogh, George Frederick Handel and possibly St Paul and Joan of Arc. We all have (or had) epilepsy.

Notice that I did not say we are epileptic. That’s the kind of label that makes me fume.

In the nine years since I had my two seizures I have never really come to terms with my diagnosis. I have dealt with it – or not, as the case may be – by not thinking about it. I just take a tablet (Tegretol Retard – great name, huh?) twice a day and have never had any seizures or related symptoms since.

But now, my neurologist wants me to think about coming off my tablets. Obviously I don’t want to take medication that I don’t need (particularly if we decide to start a family, as anti-epilepsy drugs can harm a baby), but the thought of possibly having another seizure is terrifying. I will also need to stop driving during the four months that I am slowly coming off the tablets, which is no easy feat considering that I work 30 miles away from home.

After sobbing my way through my hospital appointment last Monday I’ve spent quite a bit of time crying and worrying. It’s frustrating and upsetting for my husband and my parents to see me so anxious, but this is a part of my life that I find very hard to deal with.

I know that my attitude about epilepsy leaves a lot to be desired and that I, in fact, perpetuate the very stigma that upsets me so much. No matter how much I try – and I try not to think about it at all – I can’t help but see having epilepsy as a flaw in my character, a personal affront. I am a real perfectionist in everything I do, and having this condition actually offends me, which is a ridiculous view to have, particularly as I have probably made my biggest achievements in life in the period since I was diagnosed.

I am who I am, as I am meant to be, but nonetheless I feel a bizarre sense of shame and embarrassment about it. I also have asthma but I have no feelings about that at all. It’s just the epilepsy that bothers me and I know that it is irrational.

One thing that really angers me or upsets me, depending on my mood, is when people equate epilepsy with mental illness. I love the BBC, but seeing their report about the acquittal of Barry George made my blood boil. “Mr George, a loner and epileptic who suffers from mental illness, has consistently insisted he did not murder Ms Dando.” Would they say “a loner and asthmatic…”? “A loner and diabetic….?” “A loner and cancer patient…”? I don’t think so. He may well be a bit of a weirdo, but that’s not because he has epilepsy.

His psychologist didn’t help matters either. “Mr George suffers from various medical and psychological conditions. He has epilepsy, severe cognitive impairment that affects his intellectual and memory functioning, anxiety and panic attacks.” Would she have drawn attention to Coeliac disease or arthritis in this way? Why highlight the epilepsy? It’s just another example of negative publicity about the condition.

I got my list of famous people with epilepsy from Epilepsy.com but even that site says: “Today, celebrities with epilepsy remain “in the closet,” concerned that going public with their epilepsy will result in negative treatment and harm their employment opportunities. This is a shame, because people living with epilepsy – people who are neither geniuses nor celebrities – deserve to have role models to inspire them, and leaders to raise public awareness and understanding of their disorder.”  I would love to know of any well-known people with epilepsy – after all, one in every 131 people in the UK has the condition, so there must be some celebs out there! - as I think it would probably help me with the poor attitude I have towards it.

I can detach myself from it and see that I am getting worked up over not very much at all. There are millions of people who have much worse epilepsy than I do (I take a low dose of meds which completely controls it) and many more people who have much worse health problems in general. I do know this – but that only makes me feel worse for getting my knickers in such a twist.

My resolution is to calm down about it all – if I have another seizure I have one, and that’s that. I’ll cross that bridge when I come to it. Maybe it will all be fine, and coming off the tablets might improve my memory and lessen my tiredness. I’m lucky – my dad and husband are both willing to take me to work, even though that means at least an extra 60 miles a day for them. There are trains I could get if I can change my work hours slightly. Maybe they’ll even let me work from home a couple of days a week.

The first step – try not to cry when I have my EEG test tomorrow… I will try, I promise

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