When you meet Torie the first thing you notice is her sheer radiance and beaming smile. You cannot help but feel uplifted by her positive energy, but like many people who live with epilepsy, her smile gives no hint to the effects of her condition on her mental health.
Torie was diagnosed at ten years of age with epilepsy, although her first recollection of a seizure was many years earlier; when she was only six. It is estimated that around 600,000 people in the UK live with epilepsy which equates to circa 77 million people worldwide, yet many still live with the effects of the seizures, medications, psychiatric impacts and more – in isolation.
“I grew up considering myself to be an `evolutionary mistake`. For me, living with epilepsy meant one neurology appointment a year and a daily regime of just `taking the pills`. I had no network for support, practical or emotional, and those around me were not educated regarding my condition. I felt quite literally on my own with it.”
At the very young age of eight Torie started to experience suicidal ideation (definition: thinking about considering, or planning suicide-thoughts range from fleeting to detailed planning) and felt she had nowhere to turn. “I knew nothing of the host of amazing charities out there who offered support to young people like me, for example Epilepsy Action, Young Epilepsy, Young Minds. I’d heard of Childline but assumed that I was ‘too well’ to call them. I didn’t even know there were other young people like me.”
Quite unbelievably Torie fell completely through the net during her childhood, adolescence and well into adulthood. It wasn’t until Torie reached her thirties when both her seizures were escalating and her mental health was in continued decline, that a sequence of events led to real change. “I had a new neurologist who was wonderful. He was direct, yet sensitive, honest and funny. He made it clear that my life expectancy was low without intervention and asked if I’d consider brain surgery should I be a suitable candidate. Without hesitation I said ‘sure – scoop it out if you can’. I knew it was my best chance.”
The surgery was a great success and dramatically reduced Torie’s seizures, but post-surgery came her biggest mental health low, which led to her being hospitalised. This event finally connected Torie with the mental health system and services she needed. “I’ve now had multiple therapies – inc EMDR, Psychotherapy, DBT and CBT* – and connected with Epilepsy Action (who I nicknamed the ‘Epilepsy Samaritans’!); all giving me a tool box of strategies to move forward in better health. But what is important to know is that having therapy doesn’t mean that everything is instantly ‘fixed’; I still need to monitor and try to improve my mental health because I still experience depression and anxiety. The difference is that now I have tools to use and know where to go for support.”
Torie had to go it alone with hardly any support and guidance for over twenty years, but now she is dedicated to making sure that epilepsy and mental health stay hand in hand on the top of the agenda so she can do her bit to make sure others don’t have to hit the bottom like she did before receiving help. Torie is now an international a public speaker and corporate consultant regarding epilepsy and mental health and 18 months ago founded Epilepsy Sparks.
Reflecting, and looking to the future, Torie’s advice for others is:
- Put your hand up and ask for help. It is vital to understand that asking for help is in no way a weakness. In fact, it takes considerable strength to reach out and say “I need help”, so don’t delay.
- Get connected. Most people feel set adrift in the post-diagnosis slump, so it is important to reach out to the existing support who can bridge the gap of getting on with life after you leave the consulting room. There are a vast array of local, national and international charities and support groups out there for epilepsy, so get on google and get connected.
- Become an educator. We can’t expect the world to change for us if we aren’t educated ourselves so become empowered by knowing all you can. By remaining informed you achieve two things: one – you can advocate for yourself and others which is immensely empowering and uplifting, and; two- it removes the fear of the unknown, and allows you to feel in control of what can be controlled and less fearful of what can’t be controlled. Education is power.
- Manage your expectations. I didn’t expect my surgery to stop all of my seizures. There was a chance it could do but I didn’t want to get my hopes up and feel upset that it hadn’t so instead would be thankful if it ‘just’ reduced their severity and frequency (which I’m lucky – it did!). There isn’t a ‘cure’ for epilepsy. I had to manage others expectations in this regard too. By having realistic expectations, it allows you to have hope which is in itself good for the soul, but also avoids unnecessary lows and disappointment.
- Surround yourself with positive influences. For the sake of your own mental health, it is ok to be selective about the influences you allow in your life. Avoid toxic and negative influences (people/media) or limit your exposure to them to periods when you are personally coping well and in a good place.
- Make time for reflection. We all live a fast-paced life these days, so be careful about the things your commit to and where you put your time and energy. Medication and seizures can make us feel exhausted and so this means taking time to step back and reflect on our work load and know that if it means sometimes saying no, then that is also ok.
- Get physical. I don’t mean you have to be hitting the gym three times a week or running marathons (although some with epilepsy do!), but for me it means getting out and walking. It allows me to get exercise and gives me valuable head space away from it all to think and process my day and emotions.
- Connect with nature. It might seem a bit woo woo but as living creatures, being connected with nature and the natural world around us on a physical and emotional level can be incredibly powerful in shifting your well-being. I extend this to my home, where I surround myself with plants to give me that daily connection and balance.
- Get a creative outlet. As a child I played the piano and I have found it cathartic to return to this as an adult where I can lose hours sat learning and playing. It really helps to have something positive to concentrate on and help still the mind. My partner has also started to learn so this is something fun we can share together.
On that note – it’s important also to remember that sometime our loved ones, those closest to us, can struggle too with our diagnosis or with watching us struggle with poor mental health. They can feel helpless and guilty; so as much as the above applies to us, the patient – it must be remembered that support can be found for parents, siblings, partners and children too so encourage those around you to take advantage of this.
Lastly – whatever challenges you face, whether you live with epilepsy or care or work with someone who does, remember – it’s ok not to be ok and don’t be afraid to head to point one and put your hand up for help, then follow the steps and repeat as often as needed.
To follow Torie: