I was fourteen when I had my first grand mal seizure. It was during my sleep, and if my friend was not sleeping by my side, I would have probably not found out I had epilepsy. I kind of wish sometimes that it just would have not happened, even though I was treated and taken care of regarding my epilepsy from this point on.
The first year after discovering my epilepsy was horrible. The medicines I took were making me extremely sleepy and emotionally unstable. I would be harsh to my friends at school, and the first thing I reached out for when I came home from school every day was my bed. I remember being tired all the time and wanting to stay in bed. This isolation caused me to have a depression (which I did not know of at the time). I was sad, feeling alone and tired. The next summer, I decided to stop taking my meds so that I could feel like myself again: the funny, extraverted and curious girl I was before.
The thing is, that one bad year left scars on me that I can still feel up to this day, seven years later. I am not sure if it is because of puberty, being a teenager, the medicines I took or just the epilepsy but it had a big impact on my mental health in the following years. I am currently in the process of taking medicines, once again, because I have had what we call myoclonic seizures, a form of generalized epilepsy. For the past years, my epilepsy symptoms re-emerged, and it was really hard to tell they were actually seizures.
Unlike a tonic-clonic seizure, a myoclonic seizure is very sudden and discrete. Tonic-clonic seizures are the most heard of, and most people think that epilepsy is just that: losing consciousness and having intense convulsions with stiffening. The thing is, there are over 40 types of seizures or epilepsy, and assuming that because someone does not have a grand mal seizure, it is not epilepsy, is totally wrong.
A myoclonic seizure basically consists of having little spasms and jerks that can go unnoticed because I don’t lose consciousness. I also have other symptoms accompanying them like headaches, numb limbs, aches in my body, auras, losing concentration and having a bad short-term memory. Sometimes I will get really sleepy and emotional all of a sudden and need to rest because of seizures.
You can’t tell I am epileptic by just looking at me. Some days are better than others. Still, when I addressed my concerns about my epilepsy to other people, I’ve heard all sorts of things; You should probably just do yoga and manage your stress. You’ll be OK. Aren’t they just migraines? Are you sure it is epilepsy? You should do a little research. You should probably eat meat. If you are so tired it may be because you don’t take enough iron. You are always so sleepy all the time. Meh, your symptoms are pretty common and should not alert you.
Without having epilepsy myself, I would probably react the same way. These words (or should I say, mere opinions) are often said to try to help me, but they don’t. Even though my epilepsy is not noticeable from the exterior; it does not mean it is not there. When someone tells me something along those lines, that I probably am just tired, or that I just need to do some yoga, it hurts. I want to be believed when I say I have epilepsy. Yes, it could but worse … but please don’t tell me that. If you truly want to help a friend dealing with an illness or disorder, I would recommend that you listen to their worries and believe them when they say something is wrong. They know their body more than anyone and should be able to feel acknowledged. Sometimes, the best way to help them is to let them talk. Instead of jumping to conclusions, maybe try to ask how you can help.
Also, downsizing someone’s illness to something small can discourage them from seeing the help they truly need. In my case, my neurologist was really angry that I was untreated for such a long time. Why? Untreated epilepsy and petit-mal seizures can lead to grand-mal seizures in the long run and also further risks of SUDEP (Sudden Unexpected Death in Epilepsy). SUDEP happens when someone suffering from epilepsy is not correctly treated and can be found dead after a night of sleep. There are no signs most of the time, they can enjoy life one day without any epilepsy symptoms and found dead the next morning.
I don’t want to scare anyone, but all I am saying is don’t give advice if you are not a professional, and don’t assume someone is not suffering because it does not seem like it. Appearances can trick people and are certainly not representative of their health in a lot of cases.
My tip to anyone going through something similar would be to not feel pressured into not seeking treatment, to trust your body, your gut, but also to not let yourself be defined by what others think you should do or not do. Trust yourself.
I also challenge you to talk about your epilepsy. Not enough people talk about it and how there is no cure, even when 1 in 100 people have epilepsy. That is a lot of people!
Identifying with epilepsy was a big step for me. It helped me find a journey towards healing and also beginning being seen as who I really am. Sometimes with my type of epilepsy, I myself doubt if my jerks are really seizures, because so often I was told it was nothing. I know a lot of people with epilepsy will say that they are not defined by epilepsy, and I understand them. But what worked for me was actually acknowledging myself and identifying with epilepsy, because the truth is epilepsy defined and still defines me. It helped me be more understanding towards others and also be more informed, even if the price was my health. I now feel more real, and it makes me accept the fact that this invisible disorder is there and that I am worthy of healing and worthy of being acknowledged. Identifying with epilepsy is about having epilepsy and acknowledging it, rather than epilepsy having you. When I was not really paying attention to my epilepsy, I did not really take care of myself. I am still learning what it means to take care of myself as a young women with epilepsy and hope to still learn and grow in that journey.
I am now going at my own pace, one day at a time. I am taking medicines and going through some tests to find a better treatment. In the past, the pills I took were not working for me and I hope to find a way to cope with it without being a zombie all the time. What I am most afraid of is experiencing the same darkness I felt when I first took anticonvulsants. I am also learning what I can do to help me cope with the seizures and the side-effects of the medicine, which is principally sleepiness and feeling drowsy. The truth is, there are no exact steps to make me feel better. Some days, one or two hours of more sleep will help me. Others, I exercise. But some days, there is nothing I can do to combat the fatigue that I experience because of my seizures; and I have to accept that. I think acceptance is more effective than resistance when dealing with an illness, and I encourage everyone to do the same.
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