The opinions expressed in this article are the writer’s own and do not reflect the views of Her Campus.
TW: Heavy mention of seizures, brief discussion about pregnancy and having children.
July 12 of this year marked the end of an uphill battle that had been ongoing for about 2 years. It was the day I received the call that finally diagnosed my uncategorized, sudden, uncontrollable body movements. It’s a jerk! It’s a twitch! It’s neither of those.
I’ll tell you what I have and answer the one burning question you likely have.
How do you not know that you have epilepsy?
Well, I didn’t think that what I had was seizures, and if you’d seen me have “an episode” as I will vaguely call it, you wouldn’t think it was one either. When this all started in 2019, my family, friends, and I all ruled out epilepsy. I had never lost consciousness or had to go to the hospital. So what happened?
There’s a little misconception on all our parts on what epilepsy is. In the same way that cancer is used to describe the general condition, an abnormal growth in cells, and is more specifically defined by where it is (e.g. lung cancer), epilepsy is the overall condition of a brain disorder causing seizures, but the type of epilepsy provides the details of it: Who has the seizures? What triggers it? And the million dollar question: What kind of seizures do they get?
Yes, there’s different kinds of seizures. You’re probably thinking of someone shaking on the ground, unconscious. That’s called, generally, a tonic-clonic seizure, and it’s phrased differently depending on what part of the brain is causing the seizure. There are other seizures though, like absence seizures, which is where people lose consciousness and stare into space for a period of time, and myoclonic seizures, where the person has brief muscle twitching in certain areas or in their entire body generally.*
Going back to my own story, I didn’t think I had epilepsy because I didn’t know about the other kinds of seizures, and I thought a “seizure” was specifically a tonic-clonic seizure. My little twitches or jerks, which I can now properly define as myoclonic seizures, were unbeknownst to me, and when doing some research of my own, it truly could have been anything. So I waited to go see the doctor instead.
It’s at this point that I should note I didn’t receive the call confirming my diagnosis on July 12th. My mother did. And during this summer, with my now 18 year old self having to run laps to formally be my own envoy for the first time (I wrote an article on that a while back), I ran through a series of car rides, visits to the neurologists (I have 2, lucky me!), and multiple tests just to get a name on it:
Juvenile Myoclonic Epilepsy (JME): A type of epilepsy that begins in adolescence and is usually characterized by, you guessed it, myoclonic seizures. Nearly everyone that has JME also has tonic-clonic seizures that start showing up a couple months after the myoclonic seizures begin, but I’ve been very fortunate to never have these. My epilepsy is rather mild, thankfully, but it’s still caused some setbacks on my part.**
I think that I spent so much time waiting to get a diagnosis and having that setback, by doctors, by normative test results, by COVID-19, that I never bothered to ask myself what would happen if I got a diagnosis. It was never guaranteed, not back when my seizures started out of nowhere at 16, and not now that I finally got a chance to go to the neurologist at 18. It was one of the first things they told me when I initially went to my first neurologist at the beginning of June.
So I’m one of the lucky ones that got a diagnosis. What now?
It seems like I’ve been asking myself that question a lot these days.
I’m not quite sure if I get to call my epilepsy a chronic condition despite the fact that I’ll probably be dealing with it for the rest of my life. Epilepsy is in this gray zone for labeling it chronic, it seems. Some medical sites and organizations label it as one. Others don’t. I think a large reason as to why it’s not explicitly labeled as chronic is because some people’s seizures go away. I was told there’s a chance the seizures could die off when I hit my 40s, but also that there’s a 10-40% chance that my seizures could start again should I stop taking my medication around that time. And while everyone around me took that as the possibility of this being a temporary setback, I accepted the inevitability that this is permanent. I’m not pessimistic, but my life has already been put on pause by this. While my logic sits with the knowledge that this is momentarily, and that I’ll be able to get back to an altered version of my life once my treatment plan has been settled, my emotions have been grieving. I’d rather not gamble and have this happen again because of a hypothetical.
Some of the “what now?” is obvious. I got prescribed anticonvulsants, which I’ll be taking likely for the rest of my life, and we’ve become close friends quite quickly. I take them twice a day, and the one time I forgot to take a dose, when I was panicking to ensure I had everything the night before I moved back up to College Station for the year, my cerebellum decided to suckerpunch itself, and I spent the next day so dizzy that I stumbled. An onlooker would think I had too much to drink, but on the contrary, I’m not allowed to drink alcohol with my medication, and I’ve altogether decided to swear off of it as a result.
I have something resembling a bedtime now. A lot of people with JME have their seizures shortly after waking up, but mine don’t have that consistent pattern and only worsen in frequency and intensity if I don’t get at least 6 hours of sleep, so I’ve had to seriously cut out my eight hours. If I don’t head to sleep from around 12-2 AM, my body usually knocks me out anyways. This isn’t bad, but nighttime is really peaceful for me, and it sucks that I can’t be awake to exist in the dark.
My biggest temporary loss is not being able to drive. Those that know me have seen that, prior to this, I was in no rush to drive. I’m not the biggest fan of the idea. But what I am a big fan of is being by myself. I have to get my friends to drive me places that I can’t access by public transportation (which is most places), and it’s seriously frustrating having to ask someone else to take me to go do something when I would love to be able to go do it alone. I’m not trying to make a pity party for myself. It’s just the truth. I’m extremely grateful to my friends for adjusting to my circumstances and helping me out when I need it, but it’s frustrating on everyone’s part. I will eventually be able to drive, and my neurologist will give me the green light after observing my treatments over time, but for now, it’s an extreme setback for me.
Some of my other temporary setbacks fall into my academics. I’ve not only had to drop early courses I wanted to take since I had to adjust my schedule to how much I sleep, but I’m currently filing with disability resources here at A&M because I will need to take at least one of my finals this semester, and likely more in the future, later than they’re originally scheduled because of my schedule. An 8 AM final exam is no fun for anyone, but combine that with epilepsy affected by sleep deprivation, and the fact that I need to take the constantly crowded bus to campus, and that is a medical disaster waiting to happen.
Academic setbacks caused by my epilepsy are also appearing to have long-term consequences as well. My study abroad required to graduate with a B.A. in International Studies next spring is also on hold until my medical team gives me the all-good, and while I’m extremely grateful that I’ve been able to communicate this with my department and that they’ve been so willing to work with me, this will affect me long-term if I’m unable to complete this. Granted, I have reason, but I’m going to have to continuously explain my situation to graduate schools and employers when they ask me why I, as an international studies major, did not study abroad. It will end up throwing my work in whatever I choose to do under more scrutiny and critique than normal since I wouldn’t have that experience under my belt like most would.
There’s some other long-term consequences. Unless you live, breathe, drink, and are water (which, we’re 70% water, so I suppose this is more a personal thing), lifetime usage of any medication is pretty much a slow and painful death to your kidneys and liver. I haven’t been the biggest fan of water, so although I have my tricks, like adding in lemon, lime, cucumber slices, and strawberries, making the adjustment to drinking water most of the time is definitely one that I need to make so that it doesn’t affect me long-term. There’s also the neurologist appointments I’ll have to attend, likely annually. But arguably, the biggest long-term consequence for me would have to be whether or not I can have kids.
Look, I’ve been flip-flopping between whether or not I want to have children for the past couple of years. I like kids, but what’s stopped me from picking a solid stance is the tribulations of pregnancy and childbirth. I’ve heard too many horror stories and have too much distrust for American healthcare, especially after these past 2 years, for me to just go into having children without considering the minutiae of literally everything that has to do with having a kid and pregnancy.
But that was before this summer and my diagnosis, that of which is usually hereditary.
To clarify: Just because you have a parent or close relative with epilepsy doesn’t mean that you are 100% going to get it or pass it down to someone else. It has a lot to do with what kind of epilepsy you’re dealing with. JME is genetic, but it’s not explicitly caused by a family history of epilepsy. I have no family history of epilepsy, and neither of my parents have it. I don’t know what genetic condition is causing my epilepsy, and that’s what’s stopping me from having kids now: I could potentially pass it down to them. I know the feeling of a seizure, albeit my very brief and conscious ones only, and it’s terrifying. I couldn’t live with myself if I chose to have children knowing there was a big chance that they could either have the same condition as me, or that it would worsen.
Of course, what sorts this all out is, once again, several more trips to doctors and specialists to get down to the literal DNA of the problem. That’s something I’ll pursue at the right time, when I’m older and have already adjusted to my own situation physically, emotionally, and mentally. I’ve thought about getting my conditions tested now, but I’ve had to stop myself several times and go, “Alyssa, you’re 18. You’re not planning on having kids anytime soon. You can calm down and take things one step at a time.”
Would I be heartbroken if I couldn’t have kids of my own because of this? Yes, but I know I would be okay. I would be sad, but I know that I would be doing what’s right for me (A note: Other people with genetic conditions that do decide to have kids are entitled to their decision. This is a personal choice). I know there’s other options out there like adoption, and likely several other medical procedures that I have no knowledge about, but that’s a future problem that, for my well being, I’ll have to accept the outcomes of at a later time.
Ultimately, my new circumstances have been a whirlwind to adjust to. While my epilepsy presents as a physical condition, and my treatment targets and has successfully stopped my seizures, a lot of the adjusting has taken place mentally and emotionally. To my temporary circumstances. To new habits that I’ll have to keep up. To new hindrances that may lie ahead for me. And while I’m currently in uncharted territory, still trying to figure out where I go from here, I know that even on my darkest days, it’ll all work itself out. No matter what path I go down, I will be okay.
*To learn more about how these seizures are classified medically, I encourage you to read this article from The Epilepsy Foundation explaining terms used to describe and classify different seizures as defined by the International League Against Epilepsy in 2017.
**For more information on JME: read this article on it by The Epilepsy Foundation.