If I have learned one thing from life, it is that people always pass judgment. We judge things we think we understand, and sometimes we judge things we don’t even want to understand.
I judged myasthenia gravis as a disease that can easily be treated and thought it wouldn’t affect my life too much. This is because the predominant body of available literature suggested it. As I ran through possible treatment options, each as unsuccessful as the last, I quickly realized that this was not the case. I had made an error in judgment. The myasthenia gravis that lived in my body refused to be managed by most medicines and had a profound impact on my quality of life.
I then judged this situation as something that was specific to me. I felt that I was the only one facing these challenges of finding a viable treatment. I felt isolated. I felt misunderstood by both the medical community and everyone I came into contact with, including those who knew of my illness and, even more so, those who did not.
That was true until I joined myasthenia gravis groups on Facebook. In these groups, I saw people from all over the world struggling the same way I was, and desperately seeking treatment or some improvement in their condition. I met people from all socioeconomic backgrounds and circumstances who faced the same challenges I had so selfishly made mine alone. I realized then that I had judged this entire life situation with myasthenia gravis completely wrong.
I concluded that those who wrote the literature stating that myasthenia gravis is easily treated had never met people from these groups who were struggling just like me. I realized that perhaps the literature was slightly outdated and based on people with a milder presentation of the disease. I noticed that those who wrote that myasthenia gravis has little impact on quality of life did not live with myasthenia gravis. I had judged a disease and its community based completely on an outsider’s perspective.
And then I concluded that this is predominantly how we judge most things in life: We hardly ever consult those directly affected by a particular situation. We tend to read an overview written by someone else who observed a situation and wrote from their perspective about it. Isn’t it obvious that this is where the system is flawed?
Life with refractory myasthenia gravis made it clear to me that if I do not know how those in a certain situation perceive it, I cannot judge the way they are handling it. Yes, an outsider’s perspective does present an objective view of a situation, and I do deem that important. But is it truly enough to base a judgment on for an entire situation?
I have taken this lesson and applied it to my everyday life and to my perception of the news. I try not to judge too harshly or hastily. I try to think empathetically about these situations because that is how I would like the outside world to think about me. Change starts from within.
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.
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