Epilepsy is a neurological disorder that causes nerve cells in the brain to become disrupted, resulting in seizures.
When somebody is first diagnosed with a condition, family members experience a whole range of feelings. The experience of witnessing your child’s first seizure, a family member’s seizure or a friend/work colleague’s seizure can be devastating and scary. It is important to find the coping styles that works for you and your family when you deal with all of these feelings.
Reacting to a Diagnosis
People react to situations in many different ways. A parent’s reaction to their child’s diagnosis could be:
- Anger, shock, denial: Why my child? Why our family? This can’t be true.
- Confusion: What is epilepsy? What is causing my child’s epilepsy? Will my child have more seizures? What are medication side effects?
- Sadness: I want to be able to fix this or make it go away, but I can’t.
- Guilt: Why didn’t we notice something earlier? What did we do wrong? Is there something I did to cause this?
- Fear and worry: What does this mean for my child’s life and future?
- Anxiety and frustration: Parents may feel anxious and frustrated because of the unpredictable nature of the seizures
- Hope: Most parents express a hope that the seizures are only temporary, or that the seizures will be controlled
In general, the diagnosis of epilepsy, and the associated learning and/or psychosocial difficulties that may accompany epilepsy, present new challenges for parents and children as they attempt to adjust to the diagnosis and develop coping strategies that will assist them in living with epilepsy.
My Coping Experience
Over the years I have noticed that my family and I have experienced different emotions at different times of my diagnosis as we have learnt more about my condition. Talking about them, learning to manage them, and getting our questions answered all contributed to an important part of adapting and learning to cope with epilepsy. I found different types of treatment over the years to help me cope with my condition such as CBT (Cognitive Behavior Therapy) and support networking teams that can give support. By learning more about a condition, you can find better ways to cope. An individual may have questions, or may not want to think or talk about the diagnosis, but there are ways to cope with that.
Tips to Stay Healthy
One of my top tips to readers is that understanding your condition can help you control it. Understand what is important to your health:
- Take your medication correctly
- I recommend having a pill box dated ‘Monday-Friday’ to help you or your child to remember to take the prescribed medicine. I used to struggle with forgetting my pills so investing in a pot really did help. If you struggle to get your medications on time, speak to your GP and see if you can get your prescriptions delivered to you to make it less stressful for you.
- Get enough sleep
- Did you know that some people have their first and only seizures after an “all-nighter” or after not sleeping well for long periods? If you have epilepsy, lack of quality sleep makes most people more likely to have seizures. It can even increase the intensity and length of seizures. If sleep is a problem for you and, if like me, you are more prone to seizures if you are tired, then I advise you monitor your sleeping patterns and habits. Keep a little diary of what time you go to bed, what time you get up, and how you feel in the morning. Before bed, turn off TVs, computers, and other blue-light sources before you go to bed.
- Wear a medical alert bracelet
- Medical alert jewelry is a must have in my opinion, but some people don’t like the idea of it-but you really can get some lovely alert jewelry suitable for everyone. I wrote a review a while back about an ID square that is a great piece of kit. Owning some alert jewelry helps people you are with and medical professionals know about you and your condition. It can save your life.
- Educate yourself
- Last but not least-Have a look at educating yourself and your friends and family about epilepsy so that they understand the condition. Use appropriate coping styles to stay healthy. Try to ignore negative reactions from people. Live as independently as possible and try not to constantly worry about having a seizure.
We are here for you
Living Well With Epilepsy and the entire epilepsy community are here for you. It can help to find an epilepsy support group where you can meet people who understand what you’re going through whether it is online or in person. Just look at me, blogging changed my life!
You are welcome to share your own epilepsy experience or comment on this article below.
“No matter how “normal” people look, living “ordinary” lives, everyone has a story to tell.”
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.
Still working on the coping piece… Great tips. We’ve been talking about the medical ID bracelet and are finally being responsible parents and ordering one for my son.
Lance Fogan, MD
Dear Emily, your poignant description of living with and diagnosing epilepsy is so welcome. It raises epilepsy awareness but we must get the message disseminated to everyone. I personally will lecture the California Association of School Psychologists at their state convention in October. My aim to to make them aware of the non-convulsive forms that mimic “learning disorders, hearing problems, autism, etc.” My novel, DINGS, deals with your points, too. A family and the school miss the diagnosis of complex partial seizures for too long. Keep up the good work.
Emily, I just simply want to say Thank You. My son was diagnosed with Juvenile Myoclonic Epilepsy at age 8 . Life seemed as though its been a basic struggle, He is now 19 yrs old, His father was killed in motorcycle accident at age 15 (his best friend). His two sisters has moved on with their lives and he is still home with me. He is unable to hold a job d/t seizures, Friends are far and few, and its a very small town, absolutely No activities to engage in especially if a person finds out you have seizures. His depression over his diagnosis is overwhelming. Your articles have inspired me to keep hanging on for better day for him. Thank You.