I think of three words to describe living with epilepsy. These three words are: Loneliness, Hurt and Fear. Mostly epilepsy is known as having a seizure disorder. This is true, but epilepsy has many other symptoms and side effects; and even the medicines can have serious side effects. Even when we go through a period of being ” seizure free”, we still have daily concerns.
Loneliness, for many means that we stay regularly at home, unable to go anywhere unless a family member, close friend or public transportation, Uber, or Lyft takes us since we are limited and are unable to drive. Some are unable to drive for a short time according to the rules of the state or country where we live. Some are unable to drive for years or for the rest of their lives.
I also experience loneliness when I hear or see others getting together but are not included. I’m not always sure why that is. Is it an assumption that we are too ill regularly such that we are unable to participate or they are afraid that we will have a seizure and they will be unable to deal with it or help? I don’t know but I believe that if there was more education, some people would understand how to deal with seizures or the person having them. Not all seizures are alike and each person is unique. I regularly read that people are unable to have dating relationships, get married and have children simply because others are afraid and unwilling to take a chance on a relationship. I’m sure that this must be heartbreaking!
In many cultures and communities around the world there is also a stigma that comes with epilepsy or more pointedly the ignorance of what epilepsy really is and why it happens. I’ve even known people who were afraid to tell others that they have epilepsy because of the stigma attached to it and the perception that someone is “demon possessed” or that “it’s contagious”. As a result people with epilepsy are often compromised and neglected as a result.
Hurt comes in different forms, for different reasons. The hurt from simply having seizures and others don’t understand. There is physical hurt, from going through the seizure itself which can entail falling, getting bruised and potentially even severely injured. There is pain knowing that a seizure is coming, going through it then recovery. The brain, when injured for an example from having a stroke, an aneurysm or a seizure, causes great trouble. It is not seen, but can cause great trouble. This can cause great emotional hurt for many. For me, when going through one, I have felt as if something drastic just happened. I’ve even had “cluster seizures” where they happen over and over again in short succession. My last cluster involved 12 seizures in a 24 hour period and took me 3 months to recover. But we still have to figure out how to move on. This leads to the final aspect, Fear.
Fear takes place when wondering if and/ or when we will have the next seizure. For many, they have seizures very often, like many a day, with medication not controlling them and they have no idea what to do. Doctors have not found any way to control them for that individual. For others, they still have them fairly often, so there is still no idea when the next one will come. I think in general, this is the most common fear. There are some who have finally found help with their doctor’s assistance, using medicine, surgery or devices to control them. We are feeling better the longer we remain seizure free. We feel more ability to think clearly and do things we have been unable to do for long periods of time.
When thinking about Loneliness, Hurt and Fear, while they all exist in this condition, I have found the most hope and peace in my relationship with Jesus Christ, my Savior. I know that someday, “He will wipe away every tear from my eyes, There will be no more death or mourning or crying or pain, for the old order of things has passed away” (Revelation 21:4) and I will be in a perfect place (heaven) and in finally a perfect condition! I’m so looking forward to this!
Perhaps there is more that some of you can add to, in your personal experiences either with having epilepsy yourself or are a close family member, friend or caretaker. Please feel free to comment. If I can be more of help to you also, please let me know.
I started a Facebook group called Epilepsy Hope that you are welcome to join whether you have seizures or not. Just let me know that you are interested in this group and I will approve you joining. It is a spiritually focused group where we share prayer requests and pray for each other’s needs as some groups prefer that no religious or spiritual conversations are part of their groups. There are many other Facebook groups as well that can be a great help. Another Facebook group I am a part of is Epilepsy/Seizure support and discussion.
- Taking and managing medication with side effects
- Picking the right doctor
- Know what to do about each seizure. Go to the hospital or stay at home?
- Communicating with family/friends
- Family understand where you’re at, how you feel
- Understand that some days you will feel better than other days
- Can’t think clearly
- Poor memory
Some other concerns to manage are: