My Family’s Epilepsy Experience
I was diagnosed in 2006, although looking back at home videos and reminiscing, we do think I was having seizures at a younger age. My diagnosis had a huge impact on family life. Coping with my own emotions as well as my family coping too, was hard, although nobody said it would be easy.
When someone is diagnosed with epilepsy, no matter what their age, they may experience a whole range of emotions but so will their family and friends. My parents and siblings experienced sadness and my Nan, to this day, says she feels guilty for all the times she grumbled at me for not listening or all the times I nearly got struck by speeding vehicles as I stopped in the middle of the road. For a while I blamed myself though I don’t know why. It wasn’t as if I was deliberately blacking out during class or deliberately avoiding social situations, it just happened. I have learned over time that all these emotions are perfectly normal and part of an adjustment process. Still, it was one of the toughest processes I have ever had to deal with.
Mum’s hopes and aspirations for me needed to be adjusted. I wouldn’t be able to drive if my seizures carried on; I would have to be seizure free for some time. I couldn’t go out celebrating occasions with my friends in clubs as I got older, and I was a very lonely child-not what the Doctor ordered that’s for sure. Looking back, I can advise both parents and patients to not be afraid to get help for yourself from your own GP if you need it. I want to help people who are new to epilepsy, as well as those who have lived with it for a long time like myself. Your epilepsy specialist nurse understands what you are going through and will also be able to provide support.
I was provided counseling, CBT (Cognitive Behavioral Therapy) sessions, and lots of other professional support, but it came years later. If I had got it sooner, I think I would’ve coped a lot more. CBT helped me so much in the end though. Many people with intractable epilepsy (epilepsy that is difficult to control) report that stress levels or other psychological problems can affect how often they have seizures. During CBT you are counseled and taught to think differently, and I found that changing my way of thinking could allow me to control my seizures more. CBT is a “talking treatment;” with a therapist I was able to explore how I felt about myself and the world. In the United States this is referred to as talk therapy or psychotherapy.
Epilepsy’s effect on parents and siblings
My seizures didn’t/don’t just affect my parents and me, they also affect my siblings. My brother is only 3 years younger, but he went through a lot. At the time of my diagnosis he was only 7. He was confused, upset, and he really did miss out on a lot as my parents attention was on me a lot of the time. My Mum did make a point in spending time with Joe and gave him the chance to ask questions, and my sister did too, but it was still hard on them.
Everyone needs time to himself or herself. This is especially important for parents and siblings of a person with epilepsy (or any medical condition really). If you don’t take time out for yourself, stress will rise. If you are a parent who has a child with epilepsy, please remember to set aside some time each week for yourself. It is essential. Go for a walk. Talk with friends. Sit and relax or watch a movie. My Mum says, looking back, she didn’t make enough time for her to just take a break from hospital visits and sleepless nights.
During the time that my seizures were at their worst, every time her phone rang at work, every time she saw a missed call or a voice message, her heart stopped because she just knew.
Her head never stopped spinning, her mind was already on me and whether or not I was okay. It is difficult, but you must allow time for yourself.
Remembering to care for yourself
Many parents of children with epilepsy find themselves relying on family members to assist them with the care of their child if they want to go out. I have spoken to a couple of parents and they found their marriage was strained due to the constant work and stress of having a child who’s Epilepsy was severe. At the time when their Epilepsy was at its worst, they said they were close to divorce. The stress and tiredness put so much strain on them as a couple and they didn’t have any ‘me time’. If there is a chance that you can find a babysitter you trust, a day care, a kids club, or if your child has friends who’s parents are willing to watch over your child, the favour being returned, then please reach out. It doesn’t for one moment mean you don’t care, or you can’t cope, you just need space.
I have spoken to a lot of people about the impact of Epilepsy on their family life, and some people explained that family members found it difficult to talk about their epilepsy, even if they were generally helpful. Some people have said that although their family gave them support, they did not tell their friends about their children’s epilepsy because their child wanted to keep it quiet. I recommend, from experience, that you tell anyone who spends time with you about your Epilepsy, because if you were to suddenly have a seizure, they need to know what to do and what to expect.
Keeping a positive attitude
Living with epilepsy can be really hard, but one of the top things I’d like to share with the readers here is attitude towards epilepsy. Your home environment is very important; if home life is stressful or negative it can have a huge impact. If, for example, a family members attitude towards epilepsy is a negative or judgmental one, the person with epilepsy will have negative feelings too. The same goes to friends; if a friend has Epilepsy or if your parent has epilepsy, don’t be negative about it because this contributes to the stigmas society has attached to epilepsy. Negative attitudes I have found during the last 11 years of my diagnosis have been lowered expectations-people being under the impression that I simply cannot do something because of my condition. This is not always the case.
My main aim with my campaign and awareness work is positivity, and it is something I want to spread and awareness is what I want to raise. I also believe that together we can make a huge difference, for the better.
“I think this is what we all want to hear: that we are not alone in hitting the bottom, and that it is possible to come out of that place courageous, beautiful, and strong.”
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.