Emotions are at the heart of what makes us human. They are a part of everyday life for everyone. We all have challenges to deal with, but for people with epilepsy there are certain factors in our lives we share. First, there are seizures and side effects from the medications and other treatments. Then, there is the social element. Epilepsy is still a misunderstood disorder despite our activism. It is getting better, but myths still persist. Finally, there is the role of support in the home.
Whether you are struggling with uncontrolled seizures or your seizures are fully controlled, you likely have to deal with complex emotions in addition to medications and the side effects they cause. Many of the anticonvulsant drugs can cause sleepiness and blurred vision, as well as many more severe side effects including anxiety and depression. They can even lead to suicidal thoughts.
Your Medical Team
It is important to have a good medical team backing you up, listening to your every need. The relationship between doctor and patient is not one-sided, in which the doctor tells the patient what to do, which medicine or treatment to take. It is a partnership. You, the patient, are an active part of your medical care. If you are unsatisfied with how your doctor is treating you, despite all your efforts, it is time for a second opinion.
In the 1990s, when the VNS came out, my neurologist was excited about it and offered it to me as a treatment. At that time, putting a machine in my body was not the most palatable thing I had in my mind, so I declined. However, at every appointment after that, my doctor kept pushing me to have it. The more he pushed, the more I rebelled. It was time to find a new doctor who would listen to me, and I found one.
Your Epilepsy Support Group
This is where a good epilepsy support group comes into play. The resources they provide, such as a list of excellent epilepsy specialists, is invaluable for us struggling with epilepsy. Their meetings are the perfect place to talk about your problems. Everyone will relate and may be able to give you advice. Before COVID-19, transportation was a problem for some to get to the meetings. Now that they are online, it is a lot easier. Unfortunately, if you don’t have a computer with internet access, you won’t be able to enjoy these benefits.
One thing to remember about support groups is that there isn’t a one size fits all. You may have to shop around to find one that you are comfortable with and suits your personality. The good thing is that you are not limited to a group in your vicinity. You can even join a group long distance. For example, if you live in Alabama, you can join a support group in California. Not only that, there are groups on social media. It is liberating to have all these choices. I am lucky to have access to two support groups in Orange County, California, where I live:
- Epilepsy Support Network of Orange County Adult Social Group
- Epilepsy Foundation Orange County Adult Support Group
They are different but good in their unique ways. I love the fact that I don’t have to worry about transportation!
Your Caregiver Network
However, we need more than an epilepsy support group. Family and friends are the bedrock of your well-being. They are always there for you when you need them. They may not understand everything you are going through, but they are committed to your health and happiness. For adults with epilepsy, these relationships can be difficult to manage, especially because of our lack of, and desire for independence due to seizures and side effects.
Although caregivers most likely are overprotective, it is only because they care. It is hard not to be annoyed, but we have to remember they have the best intentions in mind. Open, honest communication is the key to a strong relationship. Even I have to remind myself about this. At times, I get frustrated with my lack of seizure control. However, I have a very good support system. My family cheers me on in everything I do. I take classes at the local community college and play the piano on my own.
Relationships and Two-Way Communication
Our emotions as people with epilepsy are dependent on many factors including our individual medical situations, access to good epilepsy social networks, and a support system of family and friends. The relationships we form with our doctors and medical team is also crucial to seizure freedom. And, without a support group, it can be more difficult to live with your epilepsy. There is a wealth of resources for people with epilepsy. It is a matter of finding the right one.
Finally, the ones who love you must be by your side all the way. All of these relationships have one thing in common: they require two-way communication. If this does not exist, it is going to be extremely difficult to achieve what you want: seizure freedom and an excellent quality of life. However, with all of these elements intact, it is possible to have a good, emotionally satisfying, and hopefully seizure-free life. Let’s hope it comes true for every one of us.
Soo writes the blog Soo’s Epilepsy Corner and is a regular contributor to Living Well With Epilepsy. She lives in Orange County, California. She enjoys traveling, and has been to Europe three times. Her next journey will be just as interesting, with the RNS.