Secondary epilepsy: Why everyone in my house is fighting epilepsy.

There are two definitions of secondary epilepsy. The first one is the correct, medical definition which states secondary epilepsy is where a seizure starts on one side of your brain and then spreads to the other side. The other definition, my personal favourite and the one we will be focusing on in this post, defines it as the impact epilepsy has on the family members of an individual with epilepsy.  

In the same way a seizure can spread through the brain, epilepsy can spread its annoying little tentacles of electrical activity through a family. Obviously, I don’t mean literally. Thankfully I am the only member of my family to have epilepsy and experience seizures. While I am the only person in the family to experience the seizures, I am not the only in the family living with the effects of epilepsy. Epilepsy has a firm grip on our household and all our lives are affected in some way.  

The hubster probably feels the effects the most. He is the one that must stand by and watch a majority of my seizures. Something which I can only imagine is horrific. He is also the one that has to scoop me up off the floor, both physically and mentally, when I am unable to get myself up. We rarely have a date night. It is almost impossible to plan one because we never know how I am going to feel, if I am going to have had a seizure, be recovering from a seizure, have a headache or any other epilepsy related issues. He also has had to clean up my sick or pee numerous times after I have had a seizure. Whoever said romance is dead!  

In the same way that epilepsy throws a spanner in the works when it comes to the hubster and I spending quality time together, it also gets in the way of family time. We can plan days out, adventures, jobs to do in the house etc until our hearts are content but sometimes the plans don’t even make it out of the starting gate. If I have had a seizure there is more chance of hell freezing over than there is of me making it to a theme park. Plans get cancelled all the time. Nobody ever complains.  

Finally, there is the fear. The fear epilepsy brings probably has a tighter grip on my family than it does on me. When I seizure I am out cold and not aware of what is happening. My family don’t have that luxury. They are the ones that have to witness the seizures, the ones that have to sit outside the bathroom door when I am in the bath because they are afraid I might drown, they are the ones that watch the clock while I am having a seizure, hoping it ends soon and fearing that it won’t. They are the ones that wait for me to come around, that wait for me to get home if I have been out on my own. They are the ones that live with the fear that one day I may have a bad seizure and not wake up. Yet the fear has just become another part of our normal life.   

Epilepsy does not only change the life of the person with the diagnosis but also the lives of those around them. I can’t imagine ever having to watch my child have a seizure and cannot imagine the fear that parents must feel. We talk so much about supporting those with epilepsy, but we need to remember those living with secondary epilepsy and offer them support too. Epilepsy sucks for everyone.