Chances are if you’re not a patient now, you will be. Being a patient is a condition of life for many people. Knowledge is power, so get educated! From birth through childhood, adolescence and into adulthood, we may deal with asthma, diabetes or any number of chronic conditions. Some of these conditions can last a lifetime. You can do things to optimize that experience. You can get educated and be ready to assert your values when the time comes. This will increase the chances of getting a better health outcome and may even improve your quality of life. It may not get you a perfect health outcome, just a better one. In either case, if you’re an educated patient, you can be sure you got the best deal possible.
Without knowledge about your chronic condition, you can’t have a balanced discussion with your medical team. You can’t make an informed choice. If you don’t understand the basics of your condition, you are at a disadvantage. Don’t be at a disadvantage with your medical team. You want to be able to negotiate and inspire your team. Be the captain of your team.
You don’t have to go to medical school. You’re not studying to become a doctor. Hopefully you’re not planning on treating anyone other than yourself. You do need to become smarter than your physician in this area because your quality of life depends on it. It really, really does.
My research journey
I began my research on MERRF after my daughter died in 1997. When I first heard of the diagnosis, I wanted to understand why. I was angry and wanted accountability. It wasn’t easy, but I was university educated, so I know how to research. I quickly discovered there isn’t a lot of information out there. Not in 1997 anyways. Her mitochondrial disease was so rare that anyone could have missed it. There really was nobody to blame.
The saga continues
My life went on, I had a second child, my marriage ended, but I would still look online from time to time for more information about mitochondrial disease. In 2009, I found an article, written in 2004, that seemed to describe the death of my daughter. Very weird. I decided to risk embarrassment, and contact the author. She kindly confirmed the case study was in fact about my daughter. She then referred me to a local clinic for DNA analysis and confirmed the MERRF diagnosis for my entire family. I was building my understanding of what happened for me piece by piece.
In 2010, I was referred to the Adult Metabolic Diseases Clinic (AMDC) with my MERRF diagnosis in hand. Over time, as my symptoms began to appear, I wanted to learn more and more about the disease. I went online to research using google scholar, pub med, research gate, and science direct. I learned how to read academic papers; slowly and carefully with a medical dictionary close at hand. I came to appreciate the beauty of data and the nuanced language of clinical uncertainty. I also audited two upper level university courses designed to discipline my research skills. Knowledge is power so I got educated.
Over time, I realized that very few papers had direct relevance to me as a patient. I was not the audience for these papers. Instead, they seem to be written for other scientists and while they were written about patients like me, they didn’t help me at all as a patient. Reading these papers was like learning to speak science. I needed to learn science to increase my leverage at the negotiation table with my medical team, and so that’s what I did.
The power of an educated patient
Without curiosity, knowledge has no context and will not have relevance to you in managing your chronic condition. We have to care at a deeper level and in a very personal way to seek out knowledge that can make a difference in our life. Maybe it’s because you have a condition yourself or someone you love struggles with the challenges of a chronic disease. Maybe, like me, you have lost a child to the disease. The knowledge must matter to you on a personal level for curiosity to exist at all, to be relevant to your life and to motivate you. Knowledge is power so get educated!
Without knowledge, you won’t know where you can take a calculated risk. Know the interests of the other side of the table. Your medical team will provide you with the best evidence-based medical support according to the standard of care, and that’s it. Anything more is up to you.
If you’re passive, don’t ask questions, do as you are told, and take the prescribed medication per the standard of care for your condition, your case is easier to manage. If your personal definition of health includes something more, like quality of life for example, this approach may not be work for you. I know it wasn’t enough for me. You have to negotiate for more and knowledge is power so get educated!