Someone said to me recently that I shouldn't label myself because of a medical condition. It got me thinking about how they saw me, but in a bigger way, how they saw themselves? If they don't have the experience to know what you know, then maybe it's worth blocking them out. The phrase 'self diagnoses' seemed problematic to them, but then, maybe that's just because it didn't work for them? We're all different, so look to yourself before you look to others for advice, because it's likely you know yourself better than you think. The conversation also made me think back to a time, when how I was defined, how I was mis-diagnosed, changed the course of my university career.
One of the worst Neurology Consultants I ever came across, didn't want me to label myself either. I thought I might have Catamenial Epilepsy and after looking at a huge range of researched information on it, asked if I could be put on a drug Clobazam. The reply I received from a man who did not have epilepsy was this: "No. It hasn't worked for me in the past."
I couldn't get the medication I thought I needed, but I felt angry that my idea, my knowledge of my own symptoms, was dismissed so readily out of hand. The drug I was put on instead made me effectively loose a year and a half of my life. Keppra.
I think that we should all be given the power to label ourselves if we want to. If it doesn't impact on someone else's life, why should we not be allowed to? My friend Leigh heard a young boy who wanted to become a doctor talk about his ambition to his mother in public. His motivation was that he wanted to cure a cancer that had affected one of his family members, his Nanna. Yet, instead of support, his mother told him, "Don't be silly, you'll have to get a real job." If every child was persuaded away from wanting to label themselves as a doctor, we'd all be ill. As it turns out, in this financial climate, it's actually a brilliantly secure job. It's not just a proper job, it's a career for life.
I believe that if we're empowered to give ourselves our own labels, then that's when we truly allow ourselves to flourish. Embracing the label of epilepsy, means that I'm safer as a result. It means I wear my medical ID every day. I hope the fact I don't want to shy away from the label, means that other people with epilepsy will be treated with more dignity in the future. That they won't suffer the same experience I have and that my friends have because I also label myself as an Ultra-marathon cyclist. Maybe the fact that someone who doesn't like my epilepsy label, couldn't conceive of taking part in the cycling races I do, might make them think twice about what they think epilepsy is.
Understanding yourself, how you work and blocking out the external factors in your life can be beneficial. Sometimes we need the external factors, the family support, or medical support to help us. A guiding hand educating us. But ultimately if you want to shoot for something, go for it and don't let others tell you you're not able to achieve it. If you work hard enough for something you'll achieve it.
For me, I wanted to work hard to find a medication that would control, the tiny few seizures that I did suffer, after surgery, without the horrific side effects. I kept working for it, trying another Consultant who spent more time with me, tested my epilepsy, to find the medication I needed.
I'm now on 2 medications and have been for about 5 years now. Oxcarbazepine and Clobazam.
They're enough to control my seizures and I don't suffer any side effects as a result of taking them. So as it turned out, what 'didn't work' for someone who didn't know me, or seem to want to hear what I had to say, worked for me.
Go figure.
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