Comparison is the thief of joy when you have myasthenia gravis

The problems with seeing my life through the experiences of others

Shawna Barnes avatar

by Shawna Barnes |

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We all do it. There’s a reason we have the phrase “keeping up with the Joneses,” which everyone knows and understands. For some reason, we want the outside world to see our lives through a specific viewfinder, one that shows the highlights with filters.

Because of this, as a society and as a small group of people with myasthenia gravis, we’ve lost the ability to see ourselves and our lives for what they are. We no longer see what’s important in the viewfinder of life. Do you know what I consider important? Finding a way to live my best life.

Comparing your journey with mine

One of the issues I commonly see in social media support groups, and even forums like those at Myasthenia Gravis News, is the desire to compare our journey with someone else’s. While sharing my experience to help others is one of the main reasons I’m as open as I am, it’s not to feed the disease that I call “comparisonitis.” When I began this journey, for instance, I looked to my friends with the disease who were able to live nearly normal lives. That’s what I wanted. It’s what I strove and fought for.

And in the end, it resulted in nothing but disappointment.

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There’s a reason that myasthenia gravis is considered a “snowflake disease.” We all present differently, which means the treatments, timelines, and experiences that work for each of us are different.

The “oil change,” as my friend called plasma exchange, worked well for her. Like me, she’s an armed forces veteran and was used to being active. With the treatment plan she has in place, she’s able to be quite active. She hikes, participates in marathons and triathlons, and is active in the veterans art scene.

I have another friend who’s a veteran and also receives plasmapheresis. She just completed a 50-mile marathon in the desert.

And yet another friend found a treatment plan that’s allowed her to travel across the country for work with minimal problems.

I compared my life with these three women’s. While I was exceedingly excited for them and their ability to live a fairly normal life, I also let their tales steal my joy.

The stealer of joy

By comparing my journey with theirs, I was robbing myself. I wanted what they had. While there’s nothing wrong with wanting to be better, my desire became my sole focus, my drive, and my obsession. Sound familiar?

I wanted the “oil change.” I wanted the next-level treatment. I wanted my life back. And yes, without realizing it, I was going down a rabbit hole of treatments that I didn’t fully understand.

When comparing journeys, there’s a fine line between seeking to know where your next step could be and idolizing another journey and yearning for it to be your own. Comparing lifestyles, including treatment plans, should be about identifying missing steps or alternate paths. This last part is what I was missing. I was so desperate to be active, to be a better parent to my son, that I forgot to focus on how I was actually living.

Refocusing the viewport

Once I realized that I was focused on everyone else’s journey but my own, things began to improve. I began to understand that I had my own path of medication and treatment options, from the least impactful to the most. And it takes time to make it through that learning experience, especially with the immunosuppressants often used in the treatment of myasthenia gravis.

By refocusing the viewport so I saw what my life was in its current state, I was able to begin pushing my own boundaries to live the life I was yearning for. While I’m nowhere near where my friends with their active lifestyles are, I’m in a better place today than I was this time last year.

I’ve learned to measure my own progress based on me, not others. I don’t compare my 1,600 steps a day to my friend’s 50-mile marathon. I compare them with the 1,500 steps I was doing two months ago.

What do you see when you refocus your viewport? Are you allowing “comparisonitis” to take your joy? Please let me know in the comments below.

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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