It is not often that I see medication talked about in fiction in more than a passing fashion. Recently, Darius the Great is Not Okay by Abi Khorram offered what I consider to be a great example of not only mental health representation, but an opening for discussion about medication and the difficulty a person with mental health can have in finding the right balance for them. In the book, Darius talks about the mood swings he experienced before his current regimen and the weight gain that continues to be a point of contention between him and his father, who shares a depression diagnosis.
Reading about Darius and his experience felt both good because I was seeing someone who was also dealing with depression and the search for the right medication, and bad because it made me realize that I couldn’t remember seeing this kind of representation before or anything close to it. Medication is a stigmatized subject, a sub-sect of the mental health discussion, but it shouldn’t be stigmatized because it’s similar to getting treatment for physical illnesses, those ones that people can see and thus deem “real”. Medication is highly personalized and can take time to find the right balance, so I can see why there might be hesitation to write about it, not to mention accessibility, cost, etc., but that doesn’t mean that the representation can’t start somewhere.
Ben Ace allowed me to write this post for Shattering Stigmas and my perspective is about medication side effects. As some of you may know, earlier this year The Hermit Librarian was on a temporary hiatus while I dealt with some health problems. These were a result of the side effects of my mental health and the medication I take to manage it. I want to share with you a little bit about my diagnosis, my experience with medication and its side effects, and just what the means for me as a reader and book blogger.
I have a diagnosis of Bipolar II Disorder as well as a Generalized Anxiety Disorder. I became somewhat concretely aware of having a mental illness around the time I was thirteen. For almost twenty years I’ve gone through alternating periods of therapy (voluntary and otherwise), institutionalization, nothing at all because I thought I was fine, and medication management. It is only within the last year or two that I’ve found a regiment that has remained fairly level. Getting to this point was difficult because those years were filled with periods of not knowing, misdiagnoses, wrong medications, and the sheer stigma of just trying to figure out what was going on. In my family, I had to content with an emotionally abusive mother who made it seem like there was something wrong with me because of who I was as a person, like I was “crazy”. I turned to books for help, to find solace, because where else was I going to look?
Even there, though, things were not great. I read a lot of fantasy and science fiction, stories that took place anywhere besides the real world because the real world was too painful for me. What would it have been like, though, if I’d been able to see people like me, dealing with similar situations, beating the stigma back in their lives and surviving? This isn’t to say that all stories will end well, but even stories with not-so-happily-ever-afters might have let me know that I wasn’t the only person feeling alone, trying to find some kind of peace in therapy or medication.
In recent years the rep has gotten a lot better in regards to mental health, for which I’m really grateful. There are more characters that talk about their anxiety, what it feels like to have depression, how they navigate life with OCD, and a whole host of other topics that I don’t remember seeing growing up. However, what about medication? For some people, it’s necessary, even with the side effects that might come alongside it. Medication can be incredibly helpful because it allows some people to manage their mental health, whatever that means for them.
The medications that I’m on prevent the symptoms of my MIs from making my life totally unmanageable, but there are other things that they do, other effects that significantly impact my life in different ways. One of the biggest things that has happened after the years that I’ve been on this cocktail is that my memory faculties have been impacted. I’m able to function day-to-day, but my memory suffers. Sometimes I will forget a conversation I’ve had with someone shortly after it takes place. I can forget a sentence I’ve said from a few minutes ago, or trail off in the middle of one and not remember the subject I was talking about. When reading, the words can be harder to absorb, their meanings beyond my grasp even if I know they’re words I’ve read before. Portions of text might have to be read over and over again before it sinks in. Being able to function daily with my mental illnesses has changed my reading in significant ways that I never imagined and continues to this day.
For a long time, the forgetting side effects were especially cruel because I didn’t want to admit them to anyone. I still don’t like talking about them because while I did eventually speak up, I felt like I was a burden as a mentally ill person. I still do because, with an invisible illness, I can’t point to it and say: this is why I’ve been feeling like I can’t function. That stigma, of being able to just get over something because it’s all in my head, made me ashamed for a long time. Learning to cope with years of ingrained thoughts like that made finding help difficult; remnants still stick around to this day.
The stigma of mental illness blended with the need for medication and wasn’t going to go away because I needed these medicines to survive. Without them, the symptoms from my BPDII and GAD would become unmanageable. It’s a balancing act I have to keep an eye on, even with the counteracting medication that combats the memory processing problems. Finding the ability to talk to anyone, even the doctors that are supposed to help me with this is hard. Talking about it, seeing it somewhere else, say on the page of a book, could be the first step to someone else not having to suffer in the same way or for as long as I did.
Finding the rep on the page may take time, but I hope that I and others like me that take medication to manage whatever condition they’re living with day to day get to see it. Until then, what does living with these mental illnesses mean for me, especially since I take medications that sometimes severely impact my ability to absorb text, recall story elements, and the like, as I’ve just explained?
It means that, unless I’ve read something over and over again, I’m less likely to remember it unless I took a lot of notes. With a physical book, that means my phone and notepad app are my best friend or Post-Its if I have them handy (I’m still trying to work up to annotating).
E-books have become better for me because I can highlight passages and take notes as I read so that I remember why I liked it and what I thought about it in the moment. Audiobooks seem to help me process things better, so WhisperSync in my Kindle App has become something of an enormous help with blogging because I can switch back and forth between the two best-for-me formats and still report back to my blog’s audience as well as possible.
Reading is the one thing I always felt like was mine, that I could do even if there were other things that I couldn’t, like sports or events that required me to be outgoing. I’m terrible at public speaking because my words trip over themselves if I get over excited. My tongue feels like it swells up and my speech goes too fast, especially when I get nervous or exuberant, making it hard to keep my train of thought from going off the track. That makes it feel like my brain will shut down. Reading doesn’t do that. The memory problems, though, started to make it feel like books were being taken from me when they were the last refuge for me.
It has been a conflicting time, knowing medication is helping on the one hand but also taking from me something that is such an enormous part of my being. Getting to the point where I’ve been able to acknowledge that I need help, past the shame of forgetting things, past the stigma of mental illness, is incredibly difficult. It’s not all gone, either. Medication, as I said at the beginning, is highly personal and takes work. It probably won’t be the cure-all that some people expect. It hasn’t been for me. The memory impairment has lessened but it’s not all gone. There are still times that I hide how bad it is because I still harbor feelings of shame. I don’t want those around me to know how bad things are because I continue to feel like a burden. I’m not sure if, for me, that feeling will ever go away, but for others? Maybe seeing writings about mental illness, about the facets of it, including medication and side effects, might prevent them from experiencing shame, stigma, and lingering effects of both.
My processing of the written word doesn’t feel like it used to in the sense that I can’t read as fast as I did before I was on the medication. That doesn’t stop me from loving books, though, and it doesn’t stop me from wanting to blog. I have to pay attention to when the symptoms of my mental illnesses and the medications get bad, even if that means I need to take a leave of absence from blogging or a break from reading. Neither activity is supposed to be painful or nerve-wracking, even if I do put a lot of pressure on myself.
I want to see more people in books talking about their mental illness. I want to see them talking about trying to find the right mix of medication to manage their condition. I want to share my love of books with others and respond to the love that others share in equal measure. Our mental illnesses and the way we deal with them don’t mean books are necessarily out of reach, just that we might have to approach them differently.
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Thank you so much for talking about this, Harker. I’ve found that, even with more and more fiction about mental health being published, medication is often either 1.) absent entirely from these stories, or 2.) demonized. Personally, medication keeps me functioning in my everyday life. But, like you mentioned, side effects from medications that treat mental illness are a very real thing you have to contend with– I have near-constant nausea as a side effect of my meds, but given how much better I feel when I’m taking them, it’s a trade-off I’m willing to make. I hope we see more fiction in the future that addresses ALL sides of taking medication to treat mental illness, both the good and the bad parts. Anyway, this was a wonderful post and you’re not alone in your feelings!
I hate that medication is still so widely stigmatized. You’re right; mental illness is not any different from physical illness, and it should be treated as such, and it’s not. I think part of it is that it does take work to find the right meds, the right combo, the right dosage. And sometimes, you might not even find it. I wish more books WOULD discuss it, that there were more characters who take them or who are trying to get that right one for them. I have a family member that takes medications because it keeps her balanced, keeps her mind as settled as it can. And it shouldn’t be looked at as a bad thing, if it’s what someone needs to battle their MIs. Thank you for sharing your story, Harker! 🙂