Wednesday 25 April 2012

When does someone with Epilepsy stop being someone with Epilepsy?

Hope you all had a good Easter break - as you can tell by the gaping hole in the April blog posts I had a busy one! (Sorry about that)

Something that came up twice recently, from two separate individuals in completely unrelated situations was this idea of someone who wasn't having seizures, but wasn't sure if they still had Epilepsy.
The first was told off for "trying to get the sympathy vote" by saying he had Epilepsy. The other had controlled seizures but the side effects of the medication controlling them had almost as much impact, in this situation it was affecting his work.

It goes to show how complex the whole condition is, even after the seizures aren't there.

So if you develop Epilepsy, does that mean you are Epileptic for life?

I guess the answer lies somewhere in between the individual's medical situation and actually how they want to be perceived.

I'm actually not the best person to dish out advice on this scenario. I thought after my surgery I was cured. I guess that powerful word 'cure' implies that you no longer have a medical condition. BUT, for me, the medical guidelines went out the window along with my police career when I had a break-through seizure, 5 years after my surgery, even though the medical guidelines was that if I was 2 years seizure free, I was cured.
So for me, I'm now 2 years seizure free, but without the medication I take, I would be having seizures. So I consider myself Epileptic, but then maybe that is because for better or for worse, my Epilepsy has shaped my life in a huge way?

I believe people with Epilepsy come out of scenarios that they've had to cope with stronger, but then I would think that because I have Epilepsy!

So here's a question - if you have had to deal with the crap that Epilepsy brings, seizures or side effects from brain damage or medication, can you label yourself Epileptic, or describe yourself as someone with Epilepsy?

Epilepsy can sometimes have a wider effect on people with the condition than just the seizures that come along with it. It can cause anything from social issues like mild Autism, to stammers, drowsiness... the list goes on and on.
So if you suffer these effects I would say that yeah, you could describe yourself as someone with Epilepsy. It can sometimes simplify things, the condition itself is poorly understood, never mind the complexities that go along with it.

But conversely, it's not exactly an advantage to describe yourself as someone with Epilepsy or Epileptic, I certainly don't think it gains a sympathy vote. Sadly there is the opposite effect most of the time.

If your seizures are under control and you're worried a potential boyfriend or girlfriend would dump you if you mentioned your Epilepsy, it's up to you whether you mention it or not.
If you had childhood Epilepsy or surgery, maybe you will have a breakthrough seizure, but then Joe public could equally have an Epileptic Seizure out of the blue too.

Ultimately the answer is that there isn't one.

Sorry about that completely useless bit of advice, but the honest answer is, I think it's completely up to the individual how they see themselves - every case is unique and every situation is unique. You may be happy to say "I'm Epileptic", in one scenario but the next day not mention or even plan to mention it to someone else.
It's up to the individual.

The one thing that is apparent is that medical information is private, but NOBODY should feel like they can't say:

"I have Epilepsy!"

Thursday 5 April 2012

Bully for you: Lucy's Story

When I met Lucy a couple of years ago through an event to raise awareness for Epilepsy, she was there representing the young persons group she mentors, that discusses Epilepsy and bullying.
After I went for coffee with her, I understood just how much she does for the young people she works with, not just because of the help and advice she gives, but because of the incredible role model she is herself.

The problem with speaking openly about the issues of bullying, is in order to speak about it properly, you also have to talk about the things which maybe you're lest proud of in your life, or sore points. If they weren't, it wouldn't hurt so much when people made fun of them or pointed them out.

For bullies, Epilepsy is like an all you can eat buffet - I should know. When my Epilepsy was at it's most severe, people used to make fun of my seizures too. I've heard of most things, vibrating phones, mocking speech issues, accusations that people should be put in a mental institution, unfortunately I could go on. But some of the stories Lucy had talked about, shocked even me.

The most shocking story of all however, was the one that Lucy told me about her own experience of bullying. She has incredibly bravely said, "I'd rather you published it so people know what we're up against".

This is her story of 5 years of bullying, which started in 1994 until she had to move school in 1998, because it got so bad, her family and dad in particular asked her if she would like to move.

Lucy developed generalised Tonic Clonic seizures age 8 after she was involved in a car accident. She had the seizures approximately once every 3 or 4 weeks. She didn't get a warning before she had them and already had to deal with adapting her life to keep herself safe.

On top of this, she also had her friends turn on her and they began to make her school life a living hell.
One of the boys at her school went as far as bringing a small torch into school and flashing it in her eyes while she was held down by other pupils, as he thought it would induce a seizure.
It culminated in one of her previous best friends, bringing her mum into school to complain about Lucy, saying that she should have to sit at a desk alone as she was a danger to the rest of the pupils.
The school had to ask Lucy's parent's in to discuss the matter because another parent had complained and it was the final straw for her dad.

The amazing thing with Lucy is the way she speaks about the bullies. She hopes they're okay now and that they don't have serious domestic issues they need to deal with or had a tough childhood.

As if Lucy's attitude wasn't astonishing enough, after leaving school, she went to Oxford and gained a 1st Class Honours degree in Psychology.
She explained that she is just thankful she doesn't have to be a young Epileptic now with all the ways online like Facebook or through forums, young people can be an anonymous bully. She says she always learns new things and finds "new inspiration" from the young people she mentors.

The good news is that for anyone who has Epilepsy, Lucy is the best possible example of the amazing things that are to come and that even if you experience bullying, you can have a fabulous life after school. She has so much integrity, knowledge, maturity and intelligence that she could do anything with her life. She is just simply, inside and out a beautiful young woman.

If I would take the advice of one inspirational friend Tanya, to "keep on learning", you can bet the first person I would go to, to learn more about my brain is another inspirational friend - Lucy.

Lucy has recently gone 3 and a half years seizure free after finding a medication that worked for her. She's now driving, working as a Clinical Psychologist in London and is due to get married this summer after meeting her fiancé at university while they were studying in Balliol College, at Oxford.