I was diagnosed with schizophrenia and depression on 17 January 2020. The first two drugs I got on were olanzapine (an antipsychotic) and mirtazapine (an antidepressant). Initially, I was very disciplined with my adherence but eventually I got less and less consistent around the third month. In March 2020, the world shut down due to the Covid 19 pandemic and I couldn’t get the medication I needed. And so all I did was struggle to be human in a time where everything reminded me that I had to be.
For as long as I could remember, I had had this unnamed thing that ravaged my brain and distorted my reality. And when I was finally given a name for it along with the tools to help me control it, the entire world stopped and everyone’s reality was turned upside down. I was left with no reference point, everyone was in a haze. So even when I got my medication later on, I didn’t have the energy to be religious with the regimen, out of despair mostly. This is where I encountered pill fatigue, a phenomenon that occurs when a patient loses the motivation to adhere or comply with their medication regimens mainly because of the quantity or duration advised which is seen as a pill burden.
Over the years, I went through several antipsychotics and antidepressants. Most of them did work for a while, for a nice calm minute then I gradually became resistant. Or they started killing my liver. Or my libido. My brain is like that one guy in an anime who can single-handedly knock everyone else out and just wait for the rest to come to him and face the same fate. Like Thor in that boat in the Vinland Saga.
The treatment burden is also due to the financial constraints that come with refills, appointments, and so on. I got a month’s worth of clozapine a few months back for KSh 11,000 – which is already substantially expensive, but I also had to buy anticholinergics to counter the extrapyramidal side effects that manifest due to clozapine. And then there’s the antidepressants.
I started taking clozapine because all the previous antipsychotics eventually stopped working. Clozapine is the last resort drug for treatment-resistant schizophrenia. It’s a bit unnerving to know that you’re at the last stop of the road, that if you go past this point you’ll fall off the cliff, you know. It’s even more disheartening when clozapine is quite literally the worst drug you’ve ever had to take. On the lower side of its tormenting side effects is hypersalivation which makes my pillow look like it could be classified as a geographical body of water and slurred speech for the first couple of hours after you wake up. At the midline of the list is the intense sedation. You could lose a whole day in extreme cases.
For example, I took it on Monday night last week and woke up on Wednesday morning. All day on Tuesday, I could not get myself to wake up for the life of me. The worst side effect, however, is akathisia. Akathisia is psychomotor restlessness and unease especially in the lower extremities. Every time I explain this to someone, I feel like there will never be a way I’ll be able to articulate how atrocious this feeling is. I take anticholinergics for this but sometimes, it still happens, regardless. And the other side effects are uncomfortable but not as much like the headaches, dry mouth and dizziness.
There are some ways I have tried to fix my pill fatigue with innovative methods like having pill organisers and setting google reminders or alarms. Other times I use my support system for accountability. Also doing research on the drug and being more involved in your treatment plan with your doctor helps you understand the importance of adherence and how to navigate through the obstacles you’ll face. Despite all these, the thought of the eternity of this ritual of popping tablets and capsules every night and every morning is such an unrelenting burden on my shoulders.
At first, on that day in January 2020 when I got my first prescription, I was very excited because I finally had hope in a stable life with stable mental health. But then gradually realising that I have a chronic illness and I will have to do this for the rest of my existence made the experience less and less exciting as time went by. Later on, I learnt that I wasn’t going to find the answer in the form of a miraculous cure but in the life I would decide to mould myself. And that it is okay to grieve our past selves who weren’t tethered to the seemingly endless monotony of taking medication every day. And to be strong because it doesn’t go away – you have to sit with chronic illness because it’ll always be there.
Still, it just gets too loud, sometimes.