Guest Voice: Don’t let fear hold you back from living fully with MG
Sometimes our worries can be more disabling than the disease itself
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Those of us with myasthenia gravis (MG) often discuss the symptoms we experience and spend considerable time planning around them and managing their impact on our daily lives. MG literature is full of strategies for coping with muscle weakness and poor vision or avoiding triggering our condition, but we don’t often discuss the fear and performance anxiety.
Our daily concerns, worries, and fears about whether we’ll be able to perform the usual tasks of daily living, much less adventures and excursions outside of our routine, affect us in a way that many of the “real” MG symptoms do not.
A unique kind of performance anxiety
Glenn Cutler encourages those in the MG community to be knowledgeable about symptoms so that fear of the unknown doesn’t inhibit the enjoyment of life. (Courtesy of Glenn Cutler)
These concerns and fears arise because this disease is unpredictable. We know that muscle weakness and the other effects of MG can leave us nonfunctional in situations we couldn’t have anticipated.
The fear of being unable to complete a task or of becoming suddenly incapacitated can be strong enough to prevent us from fully participating in our own lives. If we avoid doing something out of fear, we create a cycle of isolation and inactivity that only exacerbates our negative experience with the disease.
This could leave any of us with unnecessary emotional distress over our inability to function normally, even if “normal” for us is not being able to do everything we desire.
I’m not writing about the rational and well-advised adjustments we make in our daily lives that allow us to mitigate the effects of the disease, or suggesting that we shouldn’t take precautions.
I’m talking about the situations where we decide not to accept an invitation, go out to a restaurant with friends, or take a walk on the beach for fear that we will exhibit something different than “normal” or find ourselves unable to complete the planned activity.
When we decide not to participate in something we want to be a part of, we let fear limit us in ways that are perhaps more disabling than the disease itself.
So what can we do?
I think the first and most important step is to understand that we are at risk of nonparticipation. The second step is to be knowledgeable about MG and the ways we can avoid and manage our symptoms and triggers.
Then, we can be self-aware in those instances when we decide not to participate and consider carefully if we are making a rational decision. MG is a significant diagnosis with very real consequences, but we shouldn’t let the fear of being unable to perform keep us from participating in a life full of wonderful opportunities and experiences.
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Note: 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. The opinions expressed in this column are not those of Myasthenia Gravis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myasthenia gravis.
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