So right now I am actually taking a really cool six-week course on Coursera called The Social Context of Mental Health and Mental Illness. It was created by the Faculty of Social Work at the University of Toronto. I had to do a reading on the history of madness and the anti-psychiatry movement and it inspired me to write a blog post about the role of a patient in their own health care. I’ve gotten a lot of the ideas and concepts in this post from this academic paper.
Essentially, the second half of the 20th century and now the beginning of the 21st century have seen massive shifts in the way mental illness is viewed and treated. De-institutionalization happened, a shift from keeping people with mental illnesses as in-patients in asylums and hospitals, to taking care of them in the community. This required society to re-imagine the traditional roles of the physician and the patient, and whether there needed to be collaboration in the design of a treatment plan for illness. And whether we need to address the “differential access to power and resources” between a doctor and their patients.
Something the article points out, which I think is highly accurate, is that people with mental illness “are often regarded as not capable of making rational choice and as lacking insight” thus leading to a paternalistic approach to their mental health care. This often means that it is the doctor who decides what is best for the patient. The needs of the patient are defined by “policy makers, health and other professionals, institutions or their family members.” As well, because mental illness affects cognition, there is often “the belief that mental patient’s views need to be validated by more “objective” accounts”.
Something else that they pointed out, which aligns with my own views on my own illness, is that “psychiatric diagnosis may lead to a long-lasting dependency of the individual on psychiatric care” and that even when someone with a mental illness is in “remission” meaning they have no symptoms, they are still seen “as in a more or less permanent sick role.” I literally think about this all the time. I assume that I will be dealing with my bipolar disorder for the rest of my life and that I will be on medication for the rest of my life. But sometimes I wonder if I need medication forever. I would love to be able to free my body of the extra chemicals and I would love to not have the annoying side-effects. (Extreme, extreme drowsiness, especially in the mornings.) Sometimes, I go months without feeling depressed and I wonder if that could be extended to years. I really don’t know. I would love to be “normal” and just live my life without worrying that I am going to have to miss a few weeks of work due to extreme symptoms. If that means reliance on medication, that’s fine, I guess. It would be an interesting experiment to see if I could go off medication, but I don’t think I want to risk the disruption to my life.
The article does have a positive view towards mental health care. It endorses a new view, an empowering view, that leads to society “accepting mentally ill health-care service users as credible individuals capable of taking responsibility for their actions and life” and seeing the “subjective experience and meaning of illness were important in both establishing the diagnosis and designing the treatment”. There needs to be an emphasis on a patient’s independence and their rights. We also need a culture that allows patients to speak for themselves and define their own needs.
This article really resonated with me. I often feel like a very passive participant in my own mental health care. I often feel powerless. I often feel hopeless because it seems as if no one actually has my best interests in mind. I understand there are many caring and wonderful physicians out there, but I don’t think I have found mine yet. So how can I take control of my own mental health care? How can I assert my rights? I have a few ideas.
- Ask questions. Usually when I go to my doctor, he writes a prescription, I take it, fill it, and that’s about it. I don’t really question what he tells me because I have put faith in the fact that he knows what he is doing. He probably does. But it would help me be more involved in my own care if I understood what was happening and if I could guide the care to fit my own needs. I need to take the time to think about what I need and how he can help me. To think about how my body works and how I need to take care of it so I can be healthy and be my best self.
- Research, research, research! Besides asking your doctor questions, it is important to do your own research. Of course, you will never know as much as a medical professional with umpteen years of medical schooling, but doing your own research can empower you to take control of your health care and understand what is happening to you. This also involves getting a second opinion, if you think that would help. Read about your symptoms. Read about your specific medication. I don’t do that. I have no idea about the details behind my medication and how it affects me and what is composed of or any of that. Read academic journals and patient testimonials. Meet people in person at support groups or go to a lecture. Research will also help you be prepared for your doctor’s appointment so that you know what questions to ask. This will all help you in making informed decisions and controlling your mental health care.
- Be organized. It would be easier for me to take control if I actually had a plan. If I created health goals. If I created a schedule for health maintenance. If I made room in my life for the things I need to do to improve my mental-well being, instead of ignoring it or procrastinating. Being organized could also include keeping a record. Tracking your symptoms as they happen. This could help you understand what you need in the future and provide you with something to discuss with your doctor.
- Take action. The only way that you can take control is by actually doing it. There are a lot of things that you can do to improve your mental health. They aren’t cures. But they can contribute to your over-all wellness. So for me, I am trying to exercise more and eat healthier. I’m also trying to expand my mind by learning and reading and trying new things.
Do you have any ideas of how to take control of your mental health care? Let me know in the comments!