Epilepsy and anxiety: My struggle

If you google epilepsy and anxiety you will find a vast amount of scientific information explaining the correlation between the two and outlining the medical reasons behind the link. All of which is very useful if you are a scientist or a doctor, or just fascinated by facts and figures. If, however, you are like me, you’re not interested in why it’s happening or the links between your medication and your anxiety, you just want to know two things, how to control/stop it and that you are not alone.

First, let me start by telling you, you really are not alone. If you are experiencing anxiety, whether it is just a quickening heartbeat when you’re out shopping or it’s so crippling you can’t leave the safety of your own home, take comfort in knowing you are not alone.

Epilepsy related anxiety appears to be a very common side effect of both epilepsy itself and the medications we take to control it. It’s like a double whammy. It is as common as headaches and sleep problems. We just seem to acknowledge and therefore, speak about it less.

Anxiety is a strange thing, I think it manifests itself in so many ways that it is difficult for people to understand. You would not look at me and necessarily think I was an anxious person. I come across as pretty laid back and somewhat scatty. Anyone that has ever worked with me would tell you I never seem to know what is happening and I am super last minute at completing work. All these things are true. I am scatty, very last minute and I walk through life not really knowing what’s going on. I am however, also always anxious.

I don’t get anxious about work or academic things, because I know I am in charge of that. I get anxious about things I cannot necessarily control. Things like getting everyone to leave my house on time, travelling in general and using public toilets are a few of my biggest anxieties. Especially the toilet one. I wouldn’t dream of entering a public toilet without Dettol wipes, hand sanitizer, toilet seat covers and at least 15 prayers.

Many of my anxieties also surround my epilepsy and the things I feel it impacts on. If I have a headache, I often feel anxious when I am out and about on my own in case I have a seizure. Being seizure free doesn’t change this either, it just makes me more on edge worrying if the streak will end. Meeting new people also makes me nervous as I struggle to remember names and can sometimes struggle to follow a conversation. Most of my anxieties are unrealistic or unfounded and most of the time blown out of proportion by my own mind.

Personally, I think that is the biggest problem with anxieties, we don’t talk about them for fear of being seen as weak, so we leave them to fester and build up in our heads until they become a massive obstacle, when in reality they are often no more than a stepping stone.

It is often a vicious cycle… anxiety and epilepsy. You have difficulties with your epilepsy which causes anxiety which in turn makes your epilepsy worse.

If I said I had figured out a way to stop the anxiety I would be lying to you. I don’t really think you can stop it. I read a self-help book once about coping with anxiety, changing the way you think, doing breathing exercises and all that jazz. It was the biggest waste of £20 ever! After I had finished reading the book, had done my deep breathing for a week and had attempted to change the way I thought I felt worse than I did before I bought the thing. Probably because I had buyer’s remorse and was wishing I had bought something more useful, like a new lipstick, instead. I considered sending the book to the charity shop but then thought that would be unfair as they would have to pay someone to take the book away it was that bad. I mean honestly, who writes these things? “close your eyes, take ten deep breaths and imagine you are crossing a rainbow” … if I was crossing a rainbow I would be concerned that I was either dying or dead! Neither of which are the most calming of thoughts!

Over the past couple of years, I have found that the best way to deal with anxieties is to talk about them. I fail to understand the concept within society that it is not OK to not be OK. It is fine to be anxious and, in many ways, natural. It becomes a far bigger and often more damaging issue when we ignore it, bury our heads in the sand, and pretend we are OK when inside we are having heart palpitations and are screaming for help.  Don’t get me wrong, simply verbally expressing your worries does not take the anxiety away, I still feel anxious all the time, but talking about and expressing my anxieties helps me keep them somewhat under control and stops them escalating. I am not suggesting you grab yourself a megaphone and walk through your nearest town centre announcing all your concerns, I am simply suggesting you confide in someone you trust when you are feeling anxious, in my experience once the anxiety itself is out in the open, it massively decreases in size.

I live in hope that one day I won’t feel anxious a solid 90 percent of the time, that I will be able to control both my epilepsy and my anxiety to a point where it no longer impacts on my life, but until then I am going to continue dealing with my anxieties by talking about them. I am not ashamed of my struggles and you shouldn’t be either.

Keep smiling, keep walking and keep believing, because the best is yet to come.