Stigma: Epilepsy, Mental Illness and the Same Old Treatment

Reality is a fickle thing. If you don’t share the reality most others share, life is more difficult.

Some people run with their “outsider” status and others fight to change and expand how their reality is seen and experienced.

And still others do what they can to hide their different reality and quietly assimilate with the Norms.

Anyone who copes with a chronic illness/condition is instantaneously positioned outside the Normal Reality and thus exposed as being Other.

Moreover, not so long ago, these Others – once identified – were institutionalized, hidden from view.

As a lifelong epileptic, I’ve had to choose what route I’d take.

And, as a teenager, I did what I could to hide my epileptastic status and assimilate. It was nobody’s business but my own and I tried to hide hide hide, hoping no one would notice my Otherness.

Baraboo Senior High, 1995

But when the seizures started to change up their routine in my 20s and I began to experience them in public with friends… causing a small number of other people to know about my epilepsy… I fortunately received support and kindness from them and stopped hiding my epileptic identity as ferociously.

At the same time, I sure as hell wasn’t open about it.

Of course, fifteen years later, I’m finally quite open about my neurological issues.

Hell, I write a blog about it.

Yet, now that I am, I can’t help but feel more wary of neurologists and psychiatrists, largely due to their professions’ wild and disturbing history…

and therefore I am always on my best behavior when interacting with any of them.

However, my present neurologist was recommended to me by the former head of neurology at my alma mater university and is also a WOMAN! and she seems wonderful.

She listens, speaks plainly and directly, has a sense of humor and seems to be very patient-centered. She is the reason I, for the first time in my life, had bone mass density tests last year because she is open about the long-term effects of the medication I take to control my seizures.

Yet, I do find it slightly weird that I’ve had to ask her to remove a prescription from my med list; specifically, clonazepam (Klonopin).

If you have any knowledge of the medications long used to treat various mental health issues, you’re familiar with this drug.

The clonazepam was prescribed by my neurologist as an emergency dose in case I had a status (or not-ending-without-medical -intervention) seizure.

However, if I was in the violent throes of a tonic-clonic, “forever” status seizure, how would I consciously ingest two pills? I guess I hope that I have this status seizure near experienced and practiced drug users.

Also, clonazapam is usually used to treat anxiety and also seizures but I didn’t see how it would stop a status seizure.

It didn’t make any sense. I also had to argue with a pharmacist about how this medication had been prescribed to me as an emergency dose for a status seizure as he had never heard of such a thing either.

My neurologist removed this from my medication list as she respected my concern.

So now I’m left to wonder if my neurologist is trying to build a case to institutionalize me.

Of course, that kind of thinking is somewhat paranoid and puts me right back on the path to institutionalization.

My family history certainly doesn’t help, nor do my recent genetic testing results which had me spend much of my time doing neurological testing last year.

In any case, I’m now only on my bone-depleting epilepsy medication which effectively controls my seizures and a whole boatload of over-the-counter vitamins.

I’ve long known that the medication prescribed to control my seizures was the same medication doctors were prescribing to friends who had bipolar and other mental health diagnoses.

Medicinally, being epileptic is still treated as a mental health disorder.

In other words, neurologists and other doctors still have no idea what our brains are capable of and they’re still using treatments used back in the day when they really didn’t know what brains did or how the meds worked.

Also, a close friend of mine is currently recovering from two weeks of electroshock therapy (ECT).

Perhaps the approach to neurological issues has changed but we are still using the same tools used decades ago.

So I’m going to continue to stay on my best behavior, cooperatively thanking culture and society for the stigmatic chains they say they’ve cut

while also remaining wary of the medical and pharmacological establishment who have had many years to come up with new ideas and have apparently chosen to instead rebrand and sell old proffered “solutions”.

In any case, I’ll keep doing my best to stay alive and out of mental institutions and hope you’re doing the same. In the meantime, my husband @MuellerLowLife and I are off to do a mural in Madison, Wisconsin.

The LowLifes are hitting the road!

It’s not like art has ever been connected to mental illness.

Last night there were ten gunshots right outside our apartment building… POP-POP-POP-POP-POP POP-POP-POP-POP-POP... so I told myself it was just people celebrating the Derek Chauvin conviction (relief and hope!) but… it’s not like there were voices or cheers or laughter or whoops or screams or…

Nope, just the gunshots and silence.

So, yeah, a change of pace is always a good thing and this embattled epileptic is very much looking forward to leaving town.

🖤

3 thoughts on “Stigma: Epilepsy, Mental Illness and the Same Old Treatment

  1. It’s interesting that Clonazepam was given to you in a pill form as a seizure-stopper. I had a student who got it in liquid form when a seizure happened. We had to shoot a syringe of it into his cheek pocket, which was a lot easier than swallowing a pill. I also know someone who got electro-shock treatment in the last ten years for severe anxiety and it really helped her. Who knew that this antiquated therapy was still in use and had value? I sure didn’t. Well creating art is a great therapy for everything, so enjoy your mural-making.

    Liked by 1 person

    1. Right? It should be in liquid form but I’m still amazed it’s used to end a status seizure… I’m on Keppra… I’d think it should be something… “more”. 😂Your student was very lucky to have you! 🙏 and I knooooow… ECT! I’m glad it helped your friend… it hasn’t helped mine and he is having a great deal of trouble remembering how to do things and also the things themselves! 😣I still don’t trust it. But we are each a snowflake. Hugs to you! Mural starts TOMORROW EARLY! 😱 Well, it’s the laborious part of it… scraping the wall, power washing it, priming it… 🤪 this is my time to shine. 💪😂

      Like

  2. There are so few days a year when I find it a true delight to be outside, but the weather is gorgeous, now, yes? (It is in NC.)

    …Searching for (or inventing) silver linings…

    xo L <–Now fully vaxxed!

    Liked by 1 person

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