Myasthenia gravis has managed to take away quite a few important aspects of my life. These are the things I continuously reminded myself of in moments of self-pity. However, today I possess a few skills and traits that stem from my disease.
I’ve refused to let this disease take over my whole life, 24/7, which means I’ve needed to learn to balance all my responsibilities with my struggling body. Myasthenia gravis has taught me the timeless skill of proper time management. This disease has dramatically lessened the number of hours per day to do all the things I wished to do.
Of course, this also meant straightening my priorities early on. I have no time to waste, so I listed the most important things to me and my growth, and cut out everything that was unnecessarily draining energy. I have to adjust these lists according to my energy levels on a given day, but it has been a solid foundation for living life to the fullest despite my limitations.
This disease’s fluctuating nature meant that at the last moment, I would often have to bail on attending events. Initially, this would fill me with guilt and feelings of anger; I immediately thought I would lose those close to me because I always faded on them. Instead, this situation emphasized the value of being honest with people. It taught me how much people value honesty, plus that people only react to the reality you present. You cannot be hurt if you do not give people the benefit of the doubt, and you cannot decide for them what they will or will not understand without giving them a chance first.
Lastly, due to the suffering myasthenia gravis has imposed on my life, I have learned not to judge a book by its cover — I always to try to practice empathy. If nothing else, my disease has highlighted the importance of empathy in a world filled with suffering. I realized that those who understood me best always did so from an empathetic point of view. This meant they did not need to understand the medical terminology of what I was going through to comprehend my struggling — that I needed their love and care (and maybe a break.)
Being bedbound for months led to vast reflections on myself and what I want from life. In time, it enabled me to process how other people might feel about certain situations, which further boosted my empathy with people who cross my path in life. I might not be able to save the world on my own, but I do believe that with a little bit of empathy, the world would be a more understanding and welcoming place.
Life with this disease has its horrible downs, but it also is filled with so many opportunities for growth and self-improvement. Ultimately, it is up to patients to either fall victim to this disease or to acquire wisdom and mature from it. Life is beautiful. Never stop fighting.
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