Living with myasthenia gravis gave me newfound respect for my body

(Photos courtesy of Jennifer Thompson)

This is Jennifer Thompson’s story:

When I signed up to share a specific way in which myasthenia gravis (MG) has affected me, I had to really pause and pray. Wow! Living with MG takes a toll in so many different ways, it makes it hard to name one I’m struggling with right now. I think it’s how I view my body.

Before I was officially diagnosed with MG, I got a handful of diagnoses in the autoimmune realm. But there were always symptoms that couldn’t be explained. I had periods of weakness that resulted in me feeling I needed to build up my strength — essentially, doing workouts after I’d experienced flares. Every time, it felt like I was starting over. I viewed my body as a machine that was meant to be pushed, with goals set to be achieved: workouts, mud runs, weightlifting. Do more. Be better. Be more fit!

Then there was the food aspect: I didn’t realize something as simple as chewing and swallowing was a luxury that would soon become a workout, even a potential hazard.

Jen with daughter Maggie

After my first crisis left me primarily bound to a wheelchair, my therapy goal was to be able to walk down the aisle with my husband, Zach, at our son’s wedding. Though I was in the wheelchair most of that night, my husband helped me get down the aisle.

I am happy to say WE achieved those goals. I say “we” because there has been no “I” in my journey.

Jen with her husband Zach

I’ve since had two exacerbations, and two further hospital stays. It’s been a long and challenging road.

I now am starting to view my body with a lot more respect and caution. I look at it as the body I want to be around in to see my grandchildren. The body blessed to carry four children. The body that traveled out of the country on so many fun excursions.

Now there isn’t quite as much choice, as most things have to be meticulously planned in advance. A lot of times we have to determine what I’m able to do.

But I know my newfound respect for my body will lead me to more and better adventures — even with MG to work around.

There’s still so much joy to be had in this journey. I have hard days. We all have hard days. But I am thankful for all I’ve been through in my life leading up to this. It allows me to be able to embrace where I am from a whole different perspective. With my family, I’m figuring out what other opportunities I can still accomplish with this body.

In recognition of Myasthenia Gravis Awareness Month in May, the MG Community Spotlight campaign features a series of stories highlighting the real-life experiences of people affected by MG,written in their own words. Follow us on Facebook and Instagram for more stories like this, using the hashtag #MGSpotlight, or read the full series.