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Grief and myasthenia gravis
Sunday, August 30, is Grief Awareness Day.
Grief can become part of life with a rare, chronic condition in many different ways. It may come with changes in what one’s body can do, plans that had to change, a diagnosis that reshaped the future, caregiving changes, or adjusting to a life that looks different than expected.
Grief can also change over time and exist alongside joy, hope, gratitude, and good days.
What is something about grief that you wish more people understood?
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3 Replies
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I wish more people understood that grief may not simply get better or go away completely. Instead, living with grief may be a matter of adapting to our situation as we adjust to grief (hopefully less biting over time) becoming part of our new normal.
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I think it’s normal for anyone who has a chronic, debilitating condition/autoimmune disease to feel cycles and coexisting feelings of grief, frustration, thankfulness, and joy. I know I do. I can feel thankful that I’m stable and functioning, and joy to be able to do some things I enjoy, while also feeling frustration on my limitations, and genuine grief that I cannot participate fully in a trip and activity that my family is planning because I just don’t have the stamina or strength to do it. But, then you make the cycle right back around again to being thankful and finding something that I can enjoy and do with my family.
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I am 82 and was diagnosed with Bulbar MG three years ago. I was very angry the first two weeks and realized this was part of grieving the changes in my life. Except for MG, I do not have any other medical conditions. My eyes are healthy, and I have responded well to the Mestinon. I read about how difficult it is for other to find a medication that works, or others have multiple health issues. I focus on the positive and am thankful for what I deal with compared to others.
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