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!"

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