Well, I saw Dr Green on Wednesday. After a weekend where I tried lowering my Seroquel from 200mgs to 150mgs – and the resulting trauma that resurfaced – it was time to chat about other options to deal with my fatigue and lack of productivity. When I say ‘lack of productivity’ – I can be precise. I recently timed my study periods. At an average of 12 hours per week I am under the minimum I need to achieve if I am to do well in honours and attempt a PhD (at this stage it is by no means certain that I would qualify). Sadly, for me, it is not a lack of brains that will prohibit me from achieving my goals. It is simply that the medication I am forced to take if I am not to spin out of control has side effects which knock me down and wipe me out. What’s a girl to do?
Sitting in Dr Green’s office I lamented the fact that the pharmaceutical companies don’t seem to be making any progress. They are not producing better medications that have less side effects – and this seems crazy considering the huge sums of money they make from people like me. Dr Green agreed. Since the last generation of anti-psychotics came out, decades ago, there has been no improvement. Part of the problem is that the people most affected by this are the least able to protest and demand change. We are ‘stoned’ on these sedatives to the point where we can’t rally together and demand better treatment.
I consider myself one of the fortunate in this category. Although I can’t work, I study part time. I have a wonderful husband who supports me emotionally, financially, and in more mundane matters. I have a good – no, I have a blessed life. But this is not the case for many of my brothers and sisters who are forced to take these medications. Many cannot work, they have fallen down the socio-economic ladder and are considered an underclass. Often living alone, often isolated – many gifted, creative and talented people are left like zombies. If, instead, they could fulfil their potential – we could all benefit from what they offered the world. I know it can be argued that Big Pharma is trying to help us – but let me say loud and clear – you are not trying hard enough!
This morning I rang my friend Robert and caught him on his way to work. Robert is researching HIV. His life involves trying to get grant applications approved, papers accepted, attending conferences, supervising students and mountains of admin. I complained about my medication and the lack of progress by Big Pharma. This hit a sore spot with him and he spent the rest of the conversation giving me his view of the situation. According to Robert, the government should be funding research. If you leave it to the private sector, then of course it is controlled by stocks and shares. But even so – the pharmaceutical companies do want to find that breakthrough medication that is going to allow people like me to live ‘normal’ lives – because they would make a killing. However, research is constrained by strict conditions that must be met for drugs to be approved. For his part, he was furious that the government just spent billions of dollars on four submarines, eighty times the amount of funding that goes to medical research! In his field the competition is fierce, teams of researchers lose their grants because the funding is simply not available. When you live with a government that feeds off fear, the money goes in the wrong direction. We could have amazing medications on the market for all kinds of illnesses if one of those submarines were not bought – and the money directed into medical research instead. There was passion and anger in his tone. And a frustration that I don’t always hear from him. He sounded burnt out.
Still, the sad thing for me is the wasted potential. The potential of so many people who could flourish and contribute to society if we could just function a bit better than we can at present. And the frustration for me is that I have no choice in the matter. Not really. There are anti-psychiatry movements out there, people with illnesses who call themselves survivors of the system. People who say these drugs are shocking. But it is not a choice for me to come off them. The risk is too great. And while Robert made me aware of the difficulties with testing anti-psychotics (most research for medications is done on animals, but animals don’t have the psychiatric problems that humans have; these medications need to pass so many trials it’s impossible to get them approved; they have to be tested on people who are already drugged to the eyeballs on other anti-psychotics etc.) I still feel defeated at times, left disempowered and without a voice.
Anyhow, I see Dr Green again next week after he has a chat with my psychiatrist. Perhaps I can try to switch from the Seroquel to another anti-psychotic. But do I want to risk spinning out of control? Do I want to miss another year of university? Or can I learn to accept myself as I am – with a clear mind, a good mind, but a limited capacity to perform. As souls who strive perhaps it is in our nature to set goals that are just out of reach, and perhaps this is good – it keeps us striving. But accepting our limitations and being happy within them is another of life’s lessons. In the end, we just have to keep on keeping on.