Coping with grief after losing members of my MG care team

Grief’s companion is pain. But in that pain, we can find richness. Holding my mother’s hand as she took her last breath was incredibly painful, but also one of the finest moments of my life. I was able to be with her as she exited this world, just as she had been with me as I entered it. It was sublime.

The British psychiatrist and author Colin Murray Parkes penned one of the best expressions of the nature of grief:

“The pain of grief is just as much part of life as the joy of love: it is perhaps the price we pay for love, the cost of commitment. To ignore this fact, or to pretend that it is not so, is to put on emotional blinkers which leave us unprepared for the losses that will inevitably occur in our own lives and unprepared to help others cope with losses in theirs.”

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September 12, 2022 Columns by Shawna Barnes

How I’m Processing Grief With Myasthenia Gravis

I was diagnosed with myasthenia gravis (MG) in June 2020. The years since then have brought losses that were incredibly painful. MG forced me to leave a career I loved, give up some of my favorite pastimes, and accept limitations that still rankle. On some level, I suppose much of this was to be expected. Because of the nature of the disease, patients know that an MG diagnosis will change their world.

For the past few months, my symptoms have been under control. I attribute much of that to my medical care team. My neurologist, primary care physician, orthopedist, and psychiatrist had become an important part of my life. It wasn’t until recently, though, that I realized just how essential they were. One of my providers died suddenly, and another abruptly left their practice. Within 24 hours, I went from stability to chaos. Why?

Navigating the loss of a provider

Upon reflection, I see that my experience isn’t unique. I’ve spoken with others who live with chronic illness, and I think we can divide the loss of a medical professional into two categories.

The first is the emotional component. We may feel as if we’ve lost a friend and confidant. There’s anxiety and fear about replacing the former team member. How do I find a new doctor? Where do I look? Will the new provider be as kind and intelligent? These feelings are accompanied by guilt. Did I express enough gratitude? Were there times when I was too short with my answers?

As if all of this isn’t enough, some practical issues must be addressed. Once I find replacements, those providers will need to become familiar with my case, reviewing pages of test results, office visit summaries, and billing reports. Then there are the inevitable insurance issues. A new provider must be in network, but not all in-network providers are accepting new patients.

Importantly, there needs to be a rapport with the new doctor. According to a Harvard Health Publishing article, “A study from Harvard-affiliated Massachusetts General Hospital finds that improving the doctor-patient relationship can produce health effects as beneficial as some common treatments, such as taking a daily aspirin to prevent heart attack.”

All of this makes the choice very complex.

I was fortunate to have a care team that was compassionate, caring, and brilliant. Now it’s time to form a new, equally effective team. The successful treatment of my MG depends on this.

Whether it stems from events connected to our illness or the losses common to all of us, grief will come. As mental health professional Vicki Harrison once said, “Grief is like the ocean; it comes on waves ebbing and flowing. Sometimes the water is calm, and sometimes it is overwhelming. All we can do is learn to swim.”

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.