Grieving who I used to be because of myasthenia gravis

How loss is a continuing part of my day-to-day life with this disease

Shawna Barnes avatar

by Shawna Barnes |

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Grief comes to me more often than I care to admit.

It doesn’t just come when a loved one passes away. When a person acquires a rare disease like myasthenia gravis (MG) later in life, as I did, grief seems to come in cycles.

Usually I try to be positive, optimistic, encouraging, and motivational in my writing. However, as I was reminded when a video feature about me dropped this month, grief over who I no longer am is a very real part of my journey. Images of my husband, Justin, helping me stand showed me how much I’ve changed.

There are days when I feel great, and MG’s effect on my day-to-day life seems minimal. Then something will remind me of the activities I once did, such as competitive swimming, and it’s as if a switch has flipped. My good mood turns sour as I begin comparing my life now with what it used to be.

The pity party starts, the “why me?” question runs through my head, and the feeling of being a burden is hard to shake.

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The grief I feel from that loss of self comes willy-nilly, with no rhymes, reasons, or seasons for when it appears. It’s much like my post-traumatic stress disorder. The grief just appears, like a summer thunderstorm in the Midwest, where I now live.

When it arrives, I usually recognize the feeling quickly. Rather than beat myself up over its appearance, I accept it for what it is. I allow myself to sit with the grief of losing myself to this disease.

I refuse, however, to just sit with it for days, weeks, and months. Instead, I sit with it long enough to validate the emotions, which helps me move to the next stage of my grief — the stage where I remember the other things that have come as a result of myasthenia gravis.

So why write about grief when it’s a departure from my normal prose?

Because I think it’s just as important. When I have online interactions, I don’t come across many people who are open to displaying more than the highlight reel of their lives. Helping people feel less alone involves vulnerability and openness.

We all have good days, bad days, terrible-want-to-bury-our-head-in-the-sand days, and everything in between. And you know what? That’s OK.

It’s OK to never “get over” losing abilities you once had because of something beyond your control.

It’s OK to have a pity party; just don’t let it consume you.

It’s OK to have a bad day.

And you know what else?

It’s also OK to have and share the great days when you feel good.

Myasthenia gravis has given me some great days, some terrible days, and everything in between. And all of it, including my responses, is OK.

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.


Lisa W avatar

Lisa W

My life has been full of the roads less travelled and the life I expected to have when married in my early 20s never came to reality. As my life has never gone to plan, I have become resilient in the face of most adversities, however grief is probably a good description to how I feel developing MG. They say there are 5 stages of grief - denial, anger, bargaining, depression and acceptance and some weeks I go through them all. Some days I accept things are different and I now have a disability and other days I'm in denial. I still want the life I had planned, and I fight to get my old life back with new treatment regimes. Most days I focus on things I can control rather than the things I can't control, and this keeps me positive about the future.
Thanks for sharing, Shawn, it makes me feel not so alone in this journey.

Linda C Jirka avatar

Linda C Jirka

Thank you for your encouraging message. I have trouble accepting my limitations, even after five years of MG. Fortunately I can still write rural health grants (I'm a writer, too). That keeps my brain working and helps me feel like I can contribute to my community. I've been in a brain funk (fatigue?) for a few months which is new. Even had some new muscle weaknesses. My daughter told me to think of every day as my best day. It's a 100% day if you've done your best for that day.


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