Living in a developing country influences my view of the world. I come into contact with the poorest of the poor, yet I can attend world-class private hospitals because I am fortunate to be able to afford medical insurance. We live in such a busy and fast-changing era that we tend to forget about the little things that we do have. Instead, we focus on what we don’t have access to. One gift every person reading this column has to be thankful for is literacy.
We often take the ability to read and write for granted. However, it opens so many doors for us to learn about our diagnosis, engage with fellow patients, or even vent to an understanding ear. When I received my diagnosis, the first thing I did to try to understand my disease better was to join a support group on Facebook. At first, I did not post any questions to the group. I only read others’ posts and comments. Although the group was mostly full of people living in completely different circumstances as mine, I realized then that I wasn’t alone. A handful of people living continents away knew how I was feeling, and that made me reluctant to succumb to self-pity.
The international group was where I started. Eventually, I joined a group for myasthenics in South Africa. This group gave me the opportunity to meet others suffering from the same disease. I formed close friendships and bonds, even attending the wedding of one group member earlier this year. My ability to read and interact with people on social media led to valuable friendships that I cherish, and it helped me to seek out the best medical professionals and care.
Studying at a tertiary institution means I have access to thousands of academic articles. I found articles about medication, and I studied them. I empowered myself to be an active and educated participant in my healthcare. I have since completed my thesis on the speech and swallowing interventions available for adults with myasthenia gravis.
We all know Google is not the best source of quality information, but it is a start. There are several articles available on PubMed (an archive of biomedical and life sciences journal literature at the U.S. National Institutes of Health’s National Library of Medicine) that require no subscriptions and are free to access. I urge you to make use of these tools and learn as much as you can. Being an educated patient enables you to be an active participant in your care.
Life with myasthenia gravis is tough as can be, but literacy has helped to lighten the burden. It has helped cure feelings of alienation, and it has connected me with friends I now consider part of my extended family. I will leave you with this maxim: “The man who does not read has no advantage over the man who cannot read.” Life is beautiful, never stop fighting.
Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.