Over the years, I have met a lot of people with different types of epilepsy and gotten to know them. Some of them have become close friends outside of just the medical condition. I am writing this post with the permission of the person I will be referring to.

I have referred to myself before as Schoedinger’s Epileptic. I am epileptic, but not disable enough to be considered disabled, but disabled enough to be considered disabled. It all depends on whether it’s about health benefits or job opportunities. Or dating. Or sports. It is just across the board. I have no idea at any point which one I will be. I need medication, but how much? Because regardless, it is unclear which type of epilepsy (or types) I have.

My friend is Epilepsy². She has what is called PNES, expanded to Psychogenic Non-Epileptic Seizures (I had to look up what that even meant too). The idea is that the seizures are not being caused by epilepsy because they are not caused by abnormal brain activity but by stress, anxiety, etc. She also has epileptic seizures, because said abnormal brain activity has shown up on EEG scans when she has a seizure. So she is Epilepsy².

What does this mean for people with epilepsy? While I maintain that we are first and foremost people who are multifaceted, it also means our epilepsy can be multifaceted. We are not one solution. It may not be the ketogenic diet, cannabis, pharmaceuticals, holistic healing, or whatever else that helps/hinders us. It might be a combination of treatment. I’m better as a human by being active, and I would be willing to pose that it probably helps prevent seizures. However, I am unwilling to go off pharmaceuticals because I believe they are predominantly responsible. My friend has her own opinion as well, and whether it is the same as mine or not, it is her opinion.

I cannot imagine being diagnosed with PNES. That seems like such an abstract condition to me (sorry, Epilepsy²). There are a lot of variables without specific identifiers. At the same time, without the existence of an EEG study, there would be no way for anyone to prove what is happening in my brain, so her and I would just both be possessed/witches/etc. (depending on the historical timeline). I knew that I could have different types of seizures, I just didn’t know someone could be diagnosed with multiple types of seizure conditions.

And here we go, and this is my non-medical-professional opinion, so DO NOT take this as actual medical insight, this is just my savage opinion:

I have never been diagnosed with an official type of epilepsy. It was originally thought to be Juvenile Myoclonic Epilepsy of Janz, but it evolved over time. I was told “You have epilepsy”, provided a prescription, and sent on my way. It bothered me because I thought it was a bit lazy to not bother to actually find out what is going on in my brain, why they happen, why it started, what it actually is.

I feel even more strongly about PNES. Look up the list of possible triggers. Stress. Anxiety. Conflict. 10-ish more listed possibilities. It is so fucking vague that I might have a non-epileptic seizure from the stress of it. It seems EXACTLY like the way that health (especially women’s health) has been addressed for MILLENNIUMS. Ignore it. Make it ambiguous. Make it so imprecise that it is virtually untreatable. Hope the patient goes away and stays at home. I hate to throw out this point again, but it’s linked back to “hysteria” and women.

Back to the point of Epilepsy² and Schoedinger’s Epileptic. Everyone can have different types and combinations of epilepsy and seizures, which is something I’ve recently learned about. It doesn’t make any one person “more” or “less” part of the condition, it just means it affects us differently. Part of that comes from our personalities too and what boundaries we are willing to push. Part of it is the time we have known about it, the way people have reacted to us, how it has shaped our lives. Sometimes, in this case, we met because of epilepsy and seizures but stayed friends because we had more in common. For the record too, she’s a worse influence on me.

I feel an upcoming blog post about women and epilepsy.