I have just had my 24th birthday. I was blessed enough to live another year. I’m not saying that to sound depressing. Life is unpredictable. Most of us, as sad as it is, will face a devastating diagnosis at some point—whether in the form of a chronic illness, like Epilepsy; a disease which you eventually recover, like an infection, or even something that eventually claims your life, like cancer. One of the many challenges of dealing with a life-changing diagnosis is that you might not know how it will affect you. When I was diagnosed with Epilepsy, it wasn’t ‘Serious’. We got on with it, I had fits, they got controlled, I carried on. We carried on. It didn’t consume us. But as I got older, the seizures got worse and more complex. There is simply no way to predict, and for some people, the uncertainty is almost as bad as the diagnosis itself. Here I will be writing a number of strategies that I think can help you make it through the ensuing challenges of diagnosis.
A Support Group
Join a support. Group. Something we didn’t have access to when I needed one the most. My friend Gurvinder and I set up a support group because not only did we need one, but we knew other people did too and we wanted to give back something we needed a long time ago. Doctors give information that’s professional and scientific, but not always something you need to hear. You want people who understand you, people who have experienced it not studied it. A support group offers you a judgment-free space to talk, and the chance to learn about others’ experiences. Doctors are so short on time, you can’t open up like you can with friends. You can’t really sit and cry like you could in a group. Join a support group as early as possible. If you’re anxious about doing so in person or don’t have a lot of time, consider an online group or a message board instead.
Ask for Help
Unlike the support group, the help was there for me but I didn’t ask for it. If people ask what they can do or volunteer help, don’t turn them away, don’t isolate yourself. Accept it. Diagnosis is scary, any condition is scary no matter how new you are to it. Whether you have one friend or 100, one family member or 60-they care, and they want to help. Write a letter, text, call, or speak up. You will be surprised how many people will be there at a drop of a hat for you.
Take Control of Your Health
I don’t have to write a lot here, other than look after yourself. Eat properly, drink water, exercise as much as you can, and have “you” time. Read, sleep, relax. Take up a hobby like music, photography, writing. You can’t live life properly If you don’t put you first. A clear mind is a healthy mind.
Live With Uncertainty
It sounds hard, but it is possible. No matter how much treatment you undergo, how many healthy lifestyle changes you make, or how much support you have, you cannot control the ultimate outcome of your condition. It’s something that has taken me 13 years to come to terms with, but I have done. I could have a seizure at any second, and I couldn’t accept that. I was convinced I would lose my job every time I had a seizure-did I? No. It’s true this is not the case for everyone.
Epilepsy is unpredictable, but so is life. No matter how healthy you are, anything could happen and we have to learn to live with that without being consumed by it. The difficulty that you have is that you are trying to get certainty in an uncertain world.
Rather than think about this in terms of probabilities, you may want to think about possibility. I do anyway. But it is impossible to rule out possibility. It’s always possible that you could end up in hospital, but anyone is open to that. You could fall and break a leg walking to work. Anything is possible. Ruling out possibility is impossible.
Take your power back
Many people begin their journey feeling hopeful, only to feel crushed when a new exercise plan and miracle diet fail to cure them. Ultimately, you must find ways to live with the lack of control. The right strategy varies for everyone, but many people have excellent luck with meditation and yoga. I wrote about this in one of my last columns. Meditation helps you live in the present moment while steadily working to ease your anxious mind.
Self-care is how you take your power back. Live each day as it comes, I mean it.
“You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face … You must do the thing you think you cannot do.”
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25 yr old monthly columnist on Living Well with Epilepsy. Full time worker of NHS England.
Emily’s Perspective is a snapshot of what life is like living with Epilepsy. I was diagnosed with Epilepsy at the age of 10.
Based in UK.