How I’m living with the fear that accompanies myasthenia gravis

Fear.

Whether it stems from uncertainty over myasthenia gravis (MG), a lack of support from friends and family, the risk of losing an occupation or vocation, or possible disease flare-ups, living with fear seems to be common in our community, regardless of MG type or severity.

And you know what? It’s OK. You, I, our friends and family — we’re allowed to be scared.

At the same time, MG has an uncanny ability to show us and those around us just what we’re made of.

Friends and family

Fear is often the reason those in our close circle stop coming around. They may not know what to say or how to act around us once we’ve been diagnosed with our incurable disease. It may escape them how to best help and support us; they might worry about doing something wrong and thus halt their efforts to assist.

Upon reflection, we may realize that this disappearance of support didn’t happen suddenly, even though it can feel that way when we’re wondering where everyone went. In my own life, friends and family stopped interacting as much after my first myasthenic crisis. It turned out that most were afraid of saying or doing the wrong things.

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Medical professionals

It may seem silly for our care team and health providers to be afraid, but in my experience, they sometimes are; they fear being wrong or admitting a lack of knowledge. That may cause them to undertreat patients, or not treat them at all. At the beginning of my journey, for instance, I noticed that doctors just put a Band-Aid on a symptom rather than dig deeper to find its underlying cause.

I’ve found that the general public often holds the medical profession to such high standards (understandably so!) that many providers feel they can’t be wrong or admit when they don’t know something. One thing I absolutely love about members of my current care team is that they’re not afraid to admit when something is beyond their scope of knowledge and that they’ll need to consult with others.

You and me

If fear has a hold on the people around us, it most certainly rears its head in patients like you and me. I face “flare fear” daily, always wondering if I’m pushing too far past my limits. My husband also experiences some flare fear, because when I overdo it and trigger a flare-up, he has more slack to pick up.

I worry that the next respiratory bug will send me into a myasthenic crisis. And I’m afraid of not being true to myself or living my best life.

So what are we to do about fear?

I face it. I acknowledge it. And I live my life anyway.

To protect my health, I keep an air purifier in my office area at The Nook, the new business I just opened. I ask that those who are ill not come near me. I take supplements that don’t interact with my medications and that my care team has approved.

I eat as well as I can. I get lots of sleep. I work on improving my health a little bit each day. And despite my fear, I keep on living my best life, because I’d rather live than simply survive.

“I learned that courage was not the absence of fear, but the triumph over it.” — Nelson Mandela

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.