One of the central things about living with a mental illness is deciding whether to go on medication or not combined with the difficult journey to finding the right medication for yourself, should you decide to. There are four things I want to focus on, which I have encountered in my experience: the process of diagnosis, deciding to be on medication, the hell of side effects and the necessity/benefits of being on medicine.
My initial diagnosis was not clear. Which most sufferers of mental illness can attest to. When I initially figured out something was wrong, I was 22 and studying my Masters. I woke up one day and could not read. It was then that I realised that my world had been losing colour slowly for a while. I would sleep all day and stay in bed all night wide awake not being able to get any work done. I had always been a highly functional person and I assumed I was being lazy but I could not shake this haziness and low energy off. I saw the school counsellor where I just cried and cried and even saw someone to help me structure my time and work. It took everything out of me to finish my coursework at the end of that year. My counsellor let me know that I had symptoms of anxiety and depression due to abandonment and rejection issues I had from my childhood. I thought it was strange and funny. I thought it was temporary. I would go for my therapy session and go straight to my room and cry for the rest of the day. It was the beginning of a long journey of unpacking and shedding tears for myself.
I was put on anxiety medication, which was straining my body but after a while, I got used to it. However, I stopped taking it. The symptoms I had of extreme behaviours, really low lows were all there but I decided it would pass. I took an opportunity to go to Korea to teach- I was in a small town in the rural town of Nonsan where I was one of less than five black people there. Everywhere I went people stopped and stared which left me constantly anxious, at times unwilling to even leave the house. I was depressed, could barely get to work and make it through the day and I would get into bed as soon as I got home. I was lonely, isolated and sad. I came back home and continued like this. My motivation was gone and I did not know what to do or think. I eventually sought help at Emthonjeni Centre at Wits University which was almost free. Each session was filled with tears and fighting to understand my life, my feelings and how to get back to being me. My therapist suggested I seek psychiatric help because I was not getting better in therapy, in fact, I was getting worse.
I pleaded with my father for money to see a psychiatrist. He believed I just needed to pray but that train had passed for me. I needed help. He eventually agreed and my psychiatrist put me on Valdoxane, to keep me motivated and lift me from the depression. Suddenly, everything became clear again and realised how, for many years, I was living in utter hell and did not realise it. When I could not afford the medication anymore (I was unwilling to trust my family with my diagnosis at this point so was basically on my own), I sought help at a public hospital. The public health system means you wait three months to see a psychiatrist after referral from a local clinic- however, with each appointment you see a different psychiatrist which feels like starting from the beginning every time. However, because my therapist worked at Helen Joseph, she put me in the front of the queue and I was diagnosed with depression and put on Fluoxetine, a generic of Prozac.
This is the point where I got worse. I was delirious, flying high one moment and crashing the next. A strew of bad decisions followed me and I exhibited very odd behaviour that affected those closest to me. I lost so much weight because I could not eat at all. Also, I felt like dying. I would dream of throwing myself into the street so a car could hit me. I had contemplated suicide before, but it escalated at this time and it felt like I was just floating by, waiting for something to take me away from this earth. It was still at Helen Joseph where another psychiatrist realised the Prozac was exacerbating my symptoms and decided what I actually had bipolar type two, not depression, but continued me on the Fluoxetine but added Sodium Valproate to the mix. It is this new diagnosis I took back with me back home to Zimbabwe, where I went to get better and figure everything out. I was on this combination of medication for about a year and I still did not get better, no matter how much I tried. I even accepted that this is what my life is going to be like. I died inside. I stopped dreaming, wishing, hoping to get better. I accepted this illness as my fate because hope was painful. Dreaming was too hard when this wall was in front of me getting higher and higher every day.
Eventually, another psychiatrist decided to switch my medication. She could not understand why I was on Prozac at all when I was diagnosed with bipolar. She put me on Olanzapine, which is specifically for bipolar. The initial dosage was quite high- at first, I responded to it well. I was sleeping better and I could function very well. My manic episodes became less and less. However, I was gaining so much weight on a daily basis and within two months I was the heaviest I had ever been in my life. I tried to hold on to the fact that I was better than I had ever been but it was difficult to live in this new body. I would get tired very easily, could not stand for long periods of time nor could I even drink a beer without feeling full and disgusted. After two months, I began to have one straight aloof mood. My emotions did not change and I did not seem to feel much outside of plain and removed. Seeing the doctor again, she lowered the dosage, which made it better. I managed to move back to Johannesburg and begin working again. The lower dosage enabled me to function at my almost normal level, but the weight gain continued. I hated it. I barely recognised myself. I speak more on that here in a previous blog.
Something happens when you’ve been struggling this long with your illness and have been on several medications- you take what you can get. You do not actually believe you will ever feel the way you used to before the symptoms took over. I accepted the weight gain, the lower energy and intermittent sleep because it was better than not being on medication. It was better than what I felt like before I sought medical help. So I took it. Also, I understood the limited options of medication for someone with bipolar- my doctor pointed out exactly five drugs that treated bipolar type two and I had been through three of them already.
I also still could not accept that I would be on medication for the rest of my life. I thought I would get better and not be on it anymore. I was wary of what people called ‘addiction’, reliance on medication to function on a day to day basis. I was ashamed to be on it. All the advice I read said I should be exercising, doing yoga, taking herbs, following a daily routine and going to therapy in order to get better, instead of relying on medication. I thought I was failing myself for being on medication. This is why I was reluctant to demand better for myself in terms of medication. Of truly exploring what I needed and what would work. I was not expressing my very specific needs with my doctor because of this shame. I was afraid that he would see that I am too focused on being on medication and assume I was enjoying it too much and take me off it. I needed medication to be able to sleep, I needed medicine that did not make me and keep me fat. I needed medicine that would get me back to my old form, where my brain was when I was a voracious reader, great academic with high efficiency. I thought I had picked myself up but the truth was that I had given up, as I share in this previous post.
Eventually, I accepted that I will be on medication for the rest of my life. Because my brain does not have what I need. My brain does not have the bare minimum of what it needs to function fully like a ‘normal’ person would, and I needed to accept that and do what I needed for MYSELF, no matter what other people thought. It did not matter whether Big Pharma was pulling a fast one on us, whether you consider it an addiction or not or that I was weak to rely on medicine. It was what I needed and I would make sure I got it. I was put on Epitec and Seroquel and for the first time in over five years, I slept. Throughout the night. I woke up feeling rested and fresh. For the first time in years. My brain was clear. The fog was gone. I could feel things, nice things. I could feel joy. I could feel hope. I could feel strength. I felt optimism. I felt the desire to live. I was in awe.
I got up and I travelled. I got up and rediscovered hobbies. I got up and I remembered my dreams. I got up and I could do the things they had said would make me better: the yoga, the exercise, the routine, the healthy eating habits and even therapy was easier to get through. I could think and plan the things I needed for myself. I could focus and work hard again. I could fall in love with myself again. I could feel the parts of myself I thought I had lost a long time ago. I was back.
This is not to say these meds do not have side effects- I cannot sleep without them, I wake up in the middle of the night to snack, sometimes I have night sweats and for the first six months, I had the most terrible nausea of my life. But I have learnt to live with it. Do I rely on these meds? Of course, I do, I would not be alive without them.
I do not know how long this combination of meds will last, or if I will run out of options at some point- or maybe I will get well enough not to be on it anymore. It does not matter right now. What matters is that I am well. I am breathing. I am feeling. I am well. I am exhaling. That is enough for now.