Being ‘functional’ exists in the gap between health and disability

I try not to be obsessed with assessing my symptoms of myasthenia gravis every morning.

I try to let things be and simply accept whatever my body decides that day. But it always ends the same way. I am in pain, and I am not healthy. A sad reality I have to face daily, and mostly alone.

But I am not sick enough to be hospitalized. Not disabled enough to need a full-time caregiver. And worst of all, I do not even know if that would truly help.

Yesterday, I was walking up the stairs to one of my clients when I suddenly faced intense air hunger. My brain immediately thought, I need to see a doctor. And right after that came another thought. To say what?

And — trust me — that realization hurts. It deeply saddens me every time I realize that I am afraid of being disappointed again and again, to the point of becoming afraid to even see a doctor.

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Just ‘surviving’ but feeling like an impostor

I hate to say it, but sometimes I feel like I am trapped in a “functioning” myasthenic body, one that works just enough to survive, but never enough to feel well.

Nevertheless, even as I monitor my symptoms each day, I judge myself daily for complaining about my health, given that I am able to walk, breathe, and maintain a so-called normal routine. Why should I complain about needing breaks and naps? Why would that be considered a problem?

This paradox is exhausting. And it sometimes makes me feel like a hypocrite.

I still feel like an impostor when I tell someone I have a rare disease, and I still feel uncomfortable using my disability card to obtain free access or using priority lines. This week, at the bank, I took a regular ticket and waited for my turn like everyone else, but my fiancé asked me why I did not choose the disability line. It would have been faster, he said, and it would have saved me from standing for an extra 15 minutes, time I could have used to recover from walking there.

Maybe I should stop minimizing my needs just because others seem to manage more easily. I didn’t think that using the disability line was necessary, but maybe I should stop being the judge of what is “necessary” and what is not. Maybe I should welcome accommodations when they appear. Maybe I should accept help when it is offered.

Because I never know when my body will decide to fail me again.

Maybe needing support does not mean I am weak. Maybe it simply means I am human.

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.