Leanne was diagnosed with epilepsy when she was 18 years old. She shares how she felt when first diagnosed and why she decided to step out of her comfort zone and go skiing. 

How did you feel when you were first diagnosed?

There was a mixture of relief of knowing finally what was going on and people started to sort of listen that there was something wrong but it also filled me with dread as I was told all these things that weren’t going to be possible. I felt like my life stopped then.

What type of seizures do you have? How does it affect you?

I have tonic-clonic and focal seizures.

What challenges have you faced since being diagnosed with epilepsy?

Trying to live a somewhat normal life while everyone around tries to put all these restrictions on you. Making you feel trapped. Feels like a constant battle.

We always say that epilepsy is more than seizures. Do you feel this has been your experience?

It’s the isolation, anxiety, uncertainty, and numerous side effects of medication. Also, the impact epilepsy has on your mental health.

Why did you decide to step out of your comfort zone and go skiing abroad?

I’ve been skiing with Disability Snowsport UK (DSUK) since December. I had seen photos and videos from their previous trips.

I’ve always quite liked the idea of going skiing as some of my family do.

But I know that since my worst prolonged seizure in 2015 left me with a weakness down the left side of my body, I have no control or feeling of where my left foot is going.

So skiing completely independently is a little bit off yet. So I would have to go with a company suitable to take adaptive skiers so it made sense to go with DSUK.

How did you find this experience?

I was initially terrified about going, there were so many first experiences to overcome.

It was the first time I travelled abroad without any family. Also, first time on a gondola, skiing on a mountain, and being on a chair lift.

And when I think about it now, I had nothing to worry about. I had an amazing time. I got so much from it.

The times up on the slope while skiing, I felt free I didn’t need to worry about anything else. I felt I fitted in.

Feeling I belonged somewhere, which is mostly down to all the help I got from DSUK staff before the holiday and during.

What measures were put in place to help you go skiing safely?

When I ski, I have metal clamps on the tips of skis which are clipped together and prevents my skis from crossing over.

Also, I have tethers attached to them which allow the instructor behind me to assist if they need to control my speed or help me turn.

My biggest worry about the trip was the chair lifts. And what would happen if I had a seizure? So I wore a harness which meant I could be attached to the chair lift, so there was no way I would have fallen.

Other things were making staff and volunteers aware of my epilepsy. Checking in each day to see how I was feeling and deciding from there how much we do that afternoon.

What would you say to others who are thinking about doing sports or any other activities?

I would say go for it. Most activities/sports can be done. There may just be a bit more thinking and planning involved.

A good place to start is charities with adaptive sports programs. Then go from there that’s how I got into cycling, kayaking and now skiing with DSUK.

What would you say to others who have been recently diagnosed with epilepsy?

Don’t let people tell you what you can and can’t do. I lived many years listening to people saying you can’t do that, it’s not safe, when in fact with a bit of thought and planning most of what I wanted to do could be achieved.

Once realising, I became more positive and accepting of my epilepsy.

I am capable and I won’t let epilepsy stop me.

If you would like to share your experiences of living with epilepsy, please email David Coates our Communications Officer at dcoates@epilepsyscotland.org.uk or call 0141 427 4911.