The importance of agency, when dealing with mental health symptoms

This may end up becoming something of a rant, so I apologise in advance if this article turns into something of a targeted slagging off session against my doctor, societal norms generally and/or the way I seem to police myself and my own thinking. I started writing it a few days ago, but had to stop because it was all a little bit raw and was causing me to become too wound up. So I hope that now, a few days later, I can write with a basically clear focus.

I have always found that one of the most frustrating elements of living with a mental health diagnosis is being forced to also live with the medication and, perhaps more significantly, the side-affects of the medication. I was prescribed chlozapine ten years ago, and have been taking it daily ever since because my doctor states that it suppresses the worst of the symptoms, and that without it I may well end up becoming unwell again, and may potentially need to be re-hospitalised. This is based on the results of research, research, research, and my doctor acts as though this is the holy grail of facts, that there is no other argument and that all alternative ideas and viewpoints are insignificant.

I find this extremely hard to swallow. I was re-hospitalised despite the fact that I was taking my medication, as was my friend N. Numerous other people have gone through the same process, from speaking to people online and reading about peoples experiences. Moreover the medication does not suppress negative symptoms, I still experience horrible paranoia and distress, and a part of me seriously wonders whether the chlozapine actually makes these experiences worse because I’m too dulled up and slow to be able to cognitively function to the best of my ability, I’m too lethargic to get up and do the things which I know will make me feel better. So the beneficial nature of the medication is not something I can entirely believe in.

On top of all the practical issues that I have with chlozapine, I’m also massively against the medication in principle. I have to take it every night before I go to sleep, which means I’m groggy every morning, my motivation levels are lower and I consequently find it harder to engage with the world around me. Moreover I hate the fact that I rely upon the medication to fall off to sleep, this seems unnatural to me. Granted, the dosage I take now is severely lower than what it was all those years ago when I started taking it, but it’s still an a chemical substance that I’m putting into my body, into my system, every single day. It really vexes me, and I think that this is really where the fundamental point I”m trying to make in this article lies.

I am being forced to do something, every single day, which I really, really don’t want to do and have therefore lost a massive amount of agency over my own life, which doesn’t help me progress in my recovery. It’s something which has a massive effect on my mood and well being because I’m having to put something into my body. It’s not just a behaviour or a work practice which I don’t like, it’s putting something into my body, affecting my body and brain chemistry in a way which I’m fundamentally against. I really do feel as though I’ve lost a fundamental right over my own life and my self and I think that this is dangerous because I need to feel that sense of agency and self control in order to keep fighting the symptoms of the schizophrenia.

I firmly believe that one of the main reasons I have been able to progress to the point that I have done, is because I have always held onto as much personal agency as I could do. I have always held onto my idea of what the “illness” is all about. I have always chosen to put that word in italics because I don’t truly believe it is simply an illness, I feel that it is a condition. I won’t go into all the details now of how I categorise and conceptualise the schizophrenia: the important thing to note here is that I held onto my own agency, over the facts of my life. I held onto my right to form my own version of events and to hold onto my own opinions and perspectives.

I’m now being told that I’ve got to grit my teeth and cast my own beliefs aside. I’ve got to take a medication every day which I hate and don’t believe is actually functioning to help me. I’m being told I’ve got to ignore what my heart and my own instincts are telling me, and act in a way which seems counter-intuitive. I firmly believe that I would progress further if I could work to come off of my medication, with the doctors support- but my doctor, as of yet, refuses to consider this as an option.

The reason I need my doctors support is that otherwise I end up feeling like I’m being rash, thoughtless, immature and extreme. So many people, over the years, have told me I’d be stupid to stop taking the meds! And so unfortunately I have internalised this message. Every time I start to consider this strategy I end up feeling as though I’d be rushing thoughtlessly into a course of action, despite the fact that I have seriously and soberly considered it and thought it through on numerous occasions! So then I get frustrated, and uncertain, and all of that negativity turns into a big ball of anxiety, stress and self criticism which basically brings on the symptoms. In fact I don’t actually think it brings on the symptoms at all, I think the symptoms are actually manifestation of all the self-doubt and frustration. Basically my own lack of agency, and my own lack of self-determination is actually creating the “mental illness.”

At the moment I’m working to keep the faith and function under the presumption that there are other ways to progress, and that the meds aren’t actually doing as much harm as I sometimes feel they might be. Sometimes it feels like a bit of a cop out, and I hate living under the fear of symptoms which I believe I could work through if I had the right feeling of support. However at the moment I don’t think I have the energy to do it alone. A part of me wonders whether, in the future, when I’m busier and my life is fuller, a better opportunity will arise for me to speak to my doctor and try again. I really hope that this time will come and that perhaps one day I could come off the meds completely, and take back this aspect of control over my daily life.

Thanks for reading.

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