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  • What Does Living Mean to You?

    Posted by Jodi Enders on July 2, 2021 at 1:00 am

    In my column a few weeks back, I mention draining interactions. After patience and effort explaining our illness to others, some people might continuously conclude that we are letting MG prevent us from living our lives.

    I agree that we mustn’t let MG have complete control of our lives. But what it means to live varies dramatically for someone with MG compared with a healthy person.

    We shouldn’t mold our lives to gratify others. Instead, we should experience life and focus on whatever sparks a fire in our inner being.

    We are the book authors of our lives, but MG is our co-writer who likes to throw in plot twists. How we respond is up to us — and only us.

    How has your meaning of living changed since your MG diagnosis?

    Jodi Enders replied 2 years, 10 months ago 2 Members · 2 Replies
  • 2 Replies
  • Elsa Safir

    July 3, 2021 at 11:08 am

    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.

    • Jodi Enders

      July 5, 2021 at 3:35 am

      Hi, Elsa! I agree; our definition of living is ever-changing with the seasons and trials of life. How I view and mentally accept my new thymectomy scar would have been much more complicated four years ago if I was your age. You are incredibly brave for deciding to prioritize your health over popular society beauty standards. Confidence is easy said than done. Like you, I avoided researching, learning, and attending support groups the first almost year of my MG diagnosis. Even taking that step of accepting the wonders of therapy is something significant to celebrate! It’s okay to view MG as something that has complicated your life. I admire that you embrace living in harmony with MG, letting it define you, but it has not stopped you from showing up every day!

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