Elsa Safir
Forum Replies Created
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Walking through mud.
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Denial was also a big part of my MG journey. I was 18 when serious symptoms showed up (inability to hold a pen to write an exam, limb weakness, double vision, speech and swallowing problems) and after several doctors did not find a diagnosis, my parents decided that all I needed to fix these symptoms was a vacation. Denial. Even after I was diagnosed with MG, my parents decided not to tell me what surgery involved: open heart surgery. Denial. Fast forward 34 years later, I know they did the best they could and that their denial was a result of feeling overwhelmed. It is not always easy to inform coworkers and acquaintances that you have MG. At least when I was young I did not disclose that to anyone. It was probably a bit of denial, but I did not have the maturity to explain well how my life was impacted at such a young age. MG loomed very large in the beginning days of diagnosis. Now it is simply something I live with and manage. Every day. I guess what I am saying is that over time you learn more about MG and how it affects you and denial goes up in smoke.
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A thought provoking question. Having lived with MG for 34 (since I was 18), let me just say that with every decade with MG, living meant something different. When I was 18 it was devastating to have a 6” thymectomy scar and no life skills to explain that to a cute guy. It did not help to find out that once I explained it to a cute guy, he looked at me with indifference and the silent answer that I read on his face was “deal me out.” For the next ten years living meant that I was a “package” and that it would take a special life partner to handle it all. My twenties were filled with fatigue, insecurity and finding my place in the world. It was not for lack of trying to understand how to live with MG but just that everyone around me was in denial about my illness. I attended a MG support group meeting, accompanied by my mom, in the big city of Durban, South Africa but was not prepared to see how ill some MG patients were. As a 20 year-old I made the choice to not be involved in the support group because it just plain scared me…I was in denial as well. With little coping skills and no therapy I was drowning in my worries about how life would turn out for me. The very thing I was afraid of, a support group, ended up being the star that led me to my future husband and to a new country. I met my husband on the international MG list-serv and even though that was the beginning of something new and wonderful, it also took years more to really figure out where I fit into my world dominated by MG. Therapy did teach me the coping skills I needed for not only my MG life, but for life in general. It sounds melodramatic to say MG prevented me from “seeing” and living to the full, but it did. People love to say that an illness does not define them. Let me tell you truthfully: MG defined who I was, and how I changed into the person I am today. MG does define me and that’s okay.
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To respond to that 2nd question of whether my medical team acknowlege fatigue as a “symptom” of MG, the answer is no. My neurologist for the past 20 years insisted that fatigue is not really a symptom especially if other symptoms of double vision, droopy eyelids, speech and swallowing are not present. I left many appointments upset that he would minimize fatigue as I consider that one of the most prevalent symptoms for the MG patient. Having dealt with MG fatigue for over 30 years, I do know that rest/sleep improves fatigue and I have learned to pace myself. Any social event or activity requires careful consideration and thinking through how fatigue can be managed. It is wonderful to have friends who understand chronic illness fatigue because you can visit, nap to recover, and continue to visit. Never expect a person with high energy to understand this. Treasure the friends who do.