Saturday, April 22, 2017

Anti-med sentiment almost killed me.

Before I start, DO remember that I believe solidly in cognitive liberty. Your brain, your choice. However, the pushing of inaccuracies and terrifying, largely inaccurate rhetoric, pushing of worst case scenarios as common and inevitable, stigma, and lumping in all sorts of things together all led to some very bad places. I support whatever you choose to do to your brain--what people discouraged me from doing with mine is the problem I am talking about here.

CN: medical neglect, discussion of stigmas, DARE, abusive parenting practices.

I was diagnosed with epilepsy when I was pretty young, 2nd grade maybe? My seizures weren't dramatically seizurelike. They were not common. I didn't know I had epilepsy. I didn't know I was taking anticonvulsants until years later, because lying to me was a hobby of my mom's I swear.

And then I took DARE at school, like we all did. And I became concerned about my mother's smoking and her drinking--which, to be fair, were at concerning levels (not feeding your kids because you need cigarettes? That's a problem. I'm ok standing in judgement on that, as the child who went to private school while simultaneously living on a starvation diet). Internalizing "drugs are bad" wasn't hard because in my life, the ones I knew about very much were. Mom fell off the toilet that she fell asleep on because she was drunk, don't wake her up unless you want to get hit. We're down to frozen pot pies because buying cigarettes was more important.

Rather than adding nuance to the discussion, my mom decided the appropriate response was to yank me off the AED I'd been taking. At this time in my life, my seizures were, again, not very dramatic, but the pronounced interictal moodswings were starting to assert themselves. So life became meltdown city, because I was having more seizures, and that's just the direction my brain was taking things at that time--hyperreactivity in all ways. It got worse after my stepdad smashed my head into a doorframe rather than not stand in said doorframe, consistent with a blow to the seizure focus.

When I was in high school the doctor did ask if I was losing time (yes) or having deja vu (also yes) but my mom told me that if I said yes he'd think I had a brain tumor. So that became a moment of lying because my mom told me to, and thus not getting back on meds. She made me scared to tell the truth.

Several years later, mommy dearest made sure I got a diagnosis of ADHD (which is fair. I have ADHD like woah). Stories of problems on stimulants abound...and I had Big Problems on Adderall. I stopped it shortly after--off anticonvulsants, and with my one known to me experience of neuroactive medications being pretty bad.

I rediscovered autism not much after that. And guess what is all over a number of autistic run pages? Anti med sentiment, that's what. And I do totally sympathize with the experiences that people had, I do. People were inappropriately medicated. They were overmedicated. They were coerced or even forced. And that is wrong and should not happen. I am strongly against that.

But the narratives and the organizations linked? So many were written not as "this happened to a person" or "this is rare but it can happen" or even "so this is a thing", but as inevitabilities. It was presented as a given that all neuroactive medications are poison and will damage your brain and probably reduce your lifespan and just generally fuck everything up.

Shortly after this, my discovery of the autistic community, and by extension the Mad Pride community, I started dating a person I went to school with. His parents were AAers. A drug is a drug is a drug, it's all poison and addictions, literally anything is better than taking a drug, et cetera. We were still together when I tried to do something about the seizures (although what I initially tried to get help for was the interictal mood swings, since they were what I could describe--I was a legal adult and still had not been made aware of a history, and a present, of epilepsy).

It took me three years after all this to even consider medication, because it was all poison, because it would shrink my brain and kill me, because life threatening side effects were inevitable and I should be proud of and roll with the interictal mood swings, that's basically a mood disorder, right? Three years of kindling. Three years of more common seizures, that recall I still wasn't aware were seizures because everyone was perseverating on the mood stuff (myself included), three years of just letting the seizure pathways get more and more ingrained.

And then I started having clusters of seizures that even laypeople noticed. They crossed the threshold from simple partial to complex partial, and thus unresponsive, and forgetting. They crossed the threshold from one at a time to clusters. They crossed over into where people would notice. The seizure became the problem, not the aftereffects.

But all medication is poison, right? Groups linked to by people I highly admire were full of that. Bad experiences were inevitable. Life destroying experiences were inevitable. That was the message, over and over and over. If it effects your brain, it'll fuck you up forever, regardless of why you take it.

By the time I got on antiepileptic medications, I was 21 years old, and terrified. My one experience with neuroactive medication, Adderall, was awful and scary and bad. I couldn't deal with that again. And the first med didn't work. The second did, but ate my blood (which is rare, not at all common). The third didn't work. Or the fourth. The fifth gave me a death rash. On and on.

And every time I said I was on Topamax, or Trileptal, or Keppra + Topamax, or whatever..."that's a lot of medication, are you sure you need that?". Autistic circles. Other neurodivergent circles. Everywhere. Rescue benzodiazepines? Yes I know those are addictive thanks.

I have intractable epilepsy. I have an incredibly high risk of SUDEP. My breathing has stopped many times. My heart has stopped at least once. All from seizure activity. I'm prone to partial status epilepticus, which can cross over into generalized status epilepticus.

There's all sorts of weird factors that go into intractability, but part of it is: how long did the seizure connections have to get established before trying to stop the seizures? And mine had a long time. A long, long time. And yet still people tell me that my medication is poison. I didn't ask them. When I want their opinion I will ask for it.

The lack of nuance, the a drug is a drug is a drug? I almost died from that (well, I did, but it didn't stick). I will be on a medgoround for the rest of my life because of choices informed by that narrative. By all means, talk about your experiences with things, but don't present them as universal. And don't present it as a moral argument (did you know? I'm weak because I can't outstubborn epilepsy. I've heard this from multiple sources). Just don't do that.

This narrative shoved down my throat, with the goal of keeping me from getting medical help for my life threatening neurological condition? It's every bit as much coercion as pushing medication is. And it's coercion that almost killed me. I don't actually give a fuck if people meant well or not, because they were letting their agenda and their feelings about how pills are bad overshadow the very real fact that people die of untreated epilepsy. It wasn't brave to tell me that I could try supplements and yoga. It was horrendously dangerous.

Do what you want with your body, but don't tell other people that their attempts to live a better life, or to live at all, are poisoning them. I have to live with the fallout from that, and am lucky I lived through it. Learn. Do better.


Rebecca yourig said...

Great post. Anyone on Meds followed by a doctor should seek another doctor specializing in field for which Meds are used before getting off the medication or making changes to whatever the prescribed course has been.

People may express concern, give information about how someone's medical condition is treated but without medical knowledge and records, they don't know enough to advise specific change and to take any such advice can be lifethreatening.

Unknown said...

I have experience with the AA/NA communities, are there are people with mental illnesses I know who almost died from not taking medication, and/or have been socially rejected from these support groups because of the no-med coercion aspect of these cultures.

hanaa said...

I'm so happy someone spoke about this. There is so much stigma surrounding taking meds to treat mental illnesses, I myself was scared of taking meds for my OCD for years. I read people's comments online and they kept on saying meds are terrible, that psychiatrists just rip you off, bla bla bla... Even after I went and saw a doctor and bought the drugs for my OCD, I was scared senseless of taking them. After I did, however, I felt so much better. I haven't been taking them for a long time, but so far so good.

Fysio said...

I was like that until 7 years ago: Anti-meds. And I did the mistake twice in my life, to 'try without'. First I tried to live 10 years long with hypothyroidism, my adhd and a lot of self-medication. It prevented me from having a good life but it never occurred to me I had a choice because there was no way I would take meds. Even drugs seemed safe compared to meds. I still can't get my head around it: How could I believe this shit? Gosh.