Last night BBC Three showed a fantastic documentary as part of their ‘Defying the Label’ season.
The documentary looked at what it was like to live as young person with epilepsy. It particularly addressed the hidden nature of epilepsy. Something which I think can be difficult for us to come to terms with but also those around us.
What happens when people can’t see your disability? It’s hidden and can strike at any time, without warning – when you’re walking down the street, in a classroom, at a party or on a date.
The programme looked at four young people with epilepsy and covered a wide range of topics in a short time.
It was also filmed mainly at Young Epilepsy, a place which I know very well from working there for two years and so it brought back a lot of memories of that time of my life too.
Loss of independence
One of the biggest things for me was how closely supervised these young people are. How can you grow up and lead an independent life when you can never be left alone?
I feel blessed my family have never been overprotective of me. Even when my seizures were new and much more regular they still allowed me to go off to university. They must have worried about me, but they never let that show and I am forever thankful to them for that. I think sometimes we don’t give the people around us the benefit they so much deserve.
I also think we should encourage family and friends to speak out more about their own experiences of the person’s epilepsy. So many of the problems for people with epilepsy is being limited from doing things because people don’t think it’s safe or don’t know how to reduce the risks. How can we ever change this if the amazing people who support us don’t feel they have a way to talk about how they allow the person they love so much to live life to the full.
The programme also looked at 14-year-old Thomas who was having tests to see if his epilepsy was due to a newly discovered brain tumour. After many tests it appeared that the tumour was the most probable cause of his seizures – he now has to decide whether to go for the brain surgery which has a 70% chance of curing his epilepsy but risks leaving him with speech and memory problems or to live with his seizures.
These are big decisions for people so young to face and part of me feels lucky that surgery has never been an option for me – could I make a decision that big?
Stress, anxiety and excitement as triggers
One of the people I related to most was 24 year old Amy, she obviously had no idea when she had had a seizure, the way she was when she came round from her seizures rung true for me, that being confused but not sure why.
She was desperate to live an independent life and was looking for a long term placement, she found The Meath in Godalming and set her heart on it. Her seizures then got worse so her supervision increased… somehow I could relate to her, doctors put her increased seizures down to her medications but I’m not so sure, I think often the emotional triggers of seizures are overlooked because we can’t fully understand them. But I know my focal seizures are triggered by stress, anxiety, excitement, it’s a hard thing to accept because all those feelings are part of life, we need to feel them but what do we do if by feeling these intense emotions we end up triggering a seizure?
The only area I felt the programme didn't do justice too was the issue of driving. And that is a biggy for so many people with epilepsy.
21 year old Olivia hadn't had a seizure for four years and wanted to learn to drive. I really felt for her as it seemed like a lot of the people around her weren't supportive of her learning to drive.
They repeatedly said you needed to be seizure free for three years before you could learn to drive and I think they needed to be clearer about his as the general rule is one year seizure free. I don’t know whether it was her family who had told her 3 years or apparently there are rare cases where due to being on controlled medication you can’t drive but it was a little misleading and I think will lead members of the public to question people with epilepsy driving after only a year, something we really don’t need.
I really felt for Olivia because it seemed like her family didn't have much faith in her abilities. It made me feel so blessed to have always had my family fighting for my independence, be it carrying on with the activities I loved so much, horse riding, skiing and swimming to getting married and having a baby.
It’s a scary thing letting a person you care about so much take risks, part of you wants to keep the safe and as a parent now I can understand that all the more. But for my family it's always been a case of how can we do this but with the least risk, be it wearing a helmet and body protector riding or getting an alarm when I had our baby. I can’t thank my family enough for their attitude towards my epilepsy, they are amazing.
If you are looking for information on driving rules Epilepsy Action has some great information here.
You can also watch the programme on BBC iplayer here until 10th September 2015. Definitely well worth a watch - inspirational young people showing us how to live life to the full with epilepsy.