Tales of Epilepsy: Refusing Treatment

For a long time, I refused any kind of treatment for my epilepsy. For a period of my life, I hated any kind of drug, even aspirin or acetaminophen, and refused to take anything. And I got endless harassment for it. It was my decision. It was my body, and my choice whether or not to pump chemicals into it, and I chose not to. I knew well the consequences of my decision—I knew that it left me open to seizures, should the circumstances, and my body’s reactions to them, be the right combination, and I chose not to take medication anyway.

I was foolish, people said. I wasn’t taking care of myself. Didn’t I know all of the bad things that could happen to me if I had a seizure at the wrong moment? I was being immature, people said. I should take medication. I didn’t like drugs? Well, I should suck it up and take them anyway. I was being selfish. How dare I!

I quickly saw it wasn’t about me for these people. It was about them. They would worry about me going away to college with untreated epilepsy. I inflicted my epilepsy upon others. My body, my neurological disorder, my choice to reject medication, and my seizures were mine. I made my decision, and I had to live with it. I had to live with my epilepsy every day. Not them.

Every partial, every seizure was an opportunity for friends, family, EMTs, ER staff, and random strangers to lecture me on my choice, and to attempt to cajole me into taking medication. I was already struggling with the loss of control over my own body. I was struggling with memory loss. I struggled with the injuries I’d gotten from falling down stairs, knocking my head on the concrete, the soreness from my body tensing up and then jerking about. I struggled with the indignity of pissing myself. I struggled with the humiliation of the lonely walk from the cab, the ambulance, to my bed, knowing I looked like hell, wasn’t quite fully aware yet, and very few actually cared enough about me and my well-being, to actually ensure I was alright. I struggled with the knowledge that I could not ever fulfill my dream of being an officer in the United States military because I had abnormal brain waves on an EEG, and these people were taking advantage of all of that to get me to do something I did not want to do, had chosen not to do, because they wanted me to do it, so I would not inconvenience them.

Sure, there were some good arguments. I could hurt someone else. My life would be much easier if I took medication. I—can’t actually think of anymore than that. But what no one considered is that I considered all of that already, and I still did not want medication. I had my reasons. They were even more intimate. Sometimes, I would get so frustrated I would blurt it out, in a desperate attempt to shut them up. Sometimes it worked. Sometimes I got, “So? Get over it already.”

My professors were outraged that I hadn’t told them while on a study abroad trip. So much so, in fact, that when I had one, they threatened to send me home if I didn’t take medication. I had very little choice. So I did. I took medication that had just been released in Europe, that hadn’t even been considered by the FDA in America, which I knew nothing about. When I forgot to bring the medication on a weekend trip, I was lectured, reduced to tears, forced to remain on the bus while the rest of my classmates toured a chateau, and forced to take a Xanax. I wouldn’t be allowed to join our group on our next stop, Auschwitz, if I didn’t take the Xanax. What choice did I have? None. So I did. I took a drug that I didn’t, and still don’t, even know the name of. I took a pill that I knew would do nothing for me because my professor thought it might, and that was all that mattered. My knowledge of my own disorder, my own body, didn’t matter.

When I got home from the trip, and that new drug ran out, I got on medication. Once I started, I couldn’t easily stop—my body adjusting to the lack of drugs would mean more partials and more seizures while the drug was purged from my body. I’ve been on medication ever since. It’s been a year and a half since my person was disregarded, my choice disrespected, and my agency taken from me. Everyone is happy I’m taking medication. They’re so pleased that I got a little keychain pillholder for emergencies. They’re satisfied that I’m being the Responsible Broken Body. Everyone is happy, but me.

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About Brittany-Ann
Brittany-Ann is a proud, self-identified feminist with fictional tendencies. She currently writes for LouisvilleKY.com and moderates at My Fault I'm Female. She smokes camels, reads Dumas, and navigates a conservative state as "one of them darn liberals."

7 Responses to Tales of Epilepsy: Refusing Treatment

  1. Ryan Prior says:

    Suffice to say, I struggle with some of the same issues. I’m medication-free right now, but far from problem-free, and it’s an ongoing source of anxiety. Stay strong and have the courage to talk with your doctor about going drug-free… and feel free to e-mail me if you want to talk about it.

  2. Thefremen says:

    This is just all too common. In an instant people are more than willing to take away your agency in how to manage your own body and mind, and when they can’t they’ll infantileze you. I hope you can get back to a point where you are drug free, as you want to be soon.

  3. Pingback: Why I Didn’t Take Them: Epilepsy and Medication « A Bookish Beemer

  4. Seán Gallagher says:

    This is why I’m so grateful that I’m so damn good at arguing with people that they always back down in the end. SO MANY PEOPLE demanded, begged, cajoled or emotionally manipulated me in an attempt to get me to go on epilepsy meds. The *******s! How dare they! In the end, if my politely stated arguments that I had done more research about the side-effects than anyone, that I should have autonomy over my body, that drugs would only mask the triggers (preventing me from every learning how to avoid seizures myself) and that I’d rather risk seizures an death than go on drugs that inhibited by intellect…in the end, if none of that shut a person up, I informed them that I was quite happy to live my life without them, that disownment was what they’d get if they didn’t drop the subject, that it was my way or the damned highway for them.

    My seizures aren’t very common, but when they come they’re pretty serious…up to 40 mins of convulsions and I’m knocked out from being useful for about 24 hrs afterwards. Still, in the years since I was diagnosed, I’ve gone from about 8 seizures a year to 3, and the ones that happen are always a predictable result of a combination of bad behaviours I know now to avoid. I’ve learned to adjust my lifestyle by aggregating the things each seizure had in common, with reference to the narrative leading up to them.

    And I’m still able to study philosophy and economics and whatever else takes my interest, because I’m not on any mind-altering medication! I decided that I wasn’t going to be medicated 100% of the time for a condition that, at most, would affect 5-10% of my time, even if the cost was taking years off the end of my life, and even if the cost was sudden death in the meantime. I thought, “screw it, if I die, at least I’ll be totally unaware of myself, and death’s been good enough for every other human being that’s ever lived…I don’t want to waste my life running away from the unavoidable.”

    Maybe if the drugs were proven 100% effective…but they’re not. What they are proven to be, as mentioned by the author of this article, is very effective at causing seizures if you ever try to withdraw from them…which sounds to me to be a very healthy property for a drug to have, with reference to a pharmaceutical company’s bottom line in any case. In fact, isn’t that how heroin dealers get you hooked? You take it to numb your pain, and before long, NOT taking it makes you sicker than taking it, and you’re in a much worse situation than you ever were in the first place?

    This is to you, Brittany-Ann…you were right all along, and if you can stand the withdrawal, go for it is what I say. To hell with the others, it’s you that feels the pain first and foremost. It is up to you to take aggregate the pros and cons, and if the people around you love you, the only thing that’s up to them is to respect your ability to make an informed decision and give you the love and support you need.

    As for your professors…you should sue the asses off them. There is no way they should be allowed to get away with the sort of blackmail they inflicted on you, and they seem to have been making medical decisions without any qualifications to speak of whatsoever. Shame on them.

  5. Seán Gallagher says:

    If anyone that reads this wants to get in touch with me to discuss their experiences with epilepsy or my battles with it, I don’t know if I’ll be allowed to post my email, but it’s seanthenoisemaker@hotmail.co.uk.

  6. Anne Chaney says:

    My husband, who is 73, started having severe seizures 2 years ago. I am so glad that he decided not to take drugs for them, even though the seizures have been frightening for me. I don’t want to describe them here, but just to say that we’ve finally found a couple of natural treatments that really work for him, so that now his seizures, which happen about once a month, have a much shorter duration, and he feels good afterwards, only needing about 2 hours extra sleep instead of 2 days, with no impaired balance afterwards, no irregular heartbeat, no goofy personality changes, and no migraine headaches, only a little neck and calf pain from the convulsions.
    The first treatment we tried was cranio-sacral therapy, which made him feel great after a seizure, but didn’t reduce the severity. So we tried accupuncture and Chinese herbs, and since then (about 3 months), the seizures are as I described above. I don’t expect that this would work for everybody, and every practitioner is different, as well as every patient, of course, but there is hope out there, and there are treatments with no side effects. There are many talented and respected natural healers. I have heard that accupuncture can help with withdrawal from medications, too. Well, I just wanted to share this in the hope that you, too, can find something that helps. It is truly a great relief.

  7. KYBorn says:

    I know this is an old post but wanted to tell you I understand.
    I was diagnosed with petit mals at age 4 with an abnormal EEG. Took meds until age 12, weaned off on advice of my doctor and went on with life. Some years later, I take medication and am struggling with grand mals even on meds. I recently crackedhad head open on the sidewalk and got in a fight withim the ER doc about putting 20 staples in my head. Now every EEG is normal.
    I hope you are well. Seizures suck!

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