Living with myasthenia gravis has taught me compassion

(Photo courtesy of Andrea Barlass)

This is Andrea Barlass’ story:

Living with myasthenia gravis (MG) has been interesting, for the lack of a better word. Despite the amount of research I did after I was diagnosed, no amount of information could have prepared me for how much this disease would change my life and me as a person.

If you’re like me, you probably spent a good portion of your life being healthy or “normal.” If so, you know what it’s like to get out and do things without being constantly exhausted.

That has been the most difficult adjustment for me. I went from being an energetic go-getter working full time in a demanding role to barely having the energy to get groceries on weekends. “This is not who I am,” I thought. “I was never like this before. What is wrong with me?”

Those are the voices that still fill my head on bad days. Sometimes they are hard to push away, but I must remind myself that there is still a lot of good in my life, and this disease has, in a strange way, led to positive changes for me.

(Photo courtesy of Andrea Barlass)

MG has taught me to have more compassion for others and myself. I work in the mental health field and used to preach self-care to everyone, but I never made time for it myself. I make it a point now to prioritize my needs, rest when I need to, and say no to things without feeling guilty.

In my “old life,” I felt like I had to accommodate everyone. But then I realized that it isn’t my job. I also learned that everyone is dealing with something, and no one has their life completely together.

In the first 18 months after my diagnosis, I experienced some significant complications. As a result, I learned how strong I am. There is a part of me that always fights and won’t give up. Before MG, this side of me was either hidden or muted. I love this part of me now.

I encourage all of you who are reading to advocate for yourselves, be assertive, speak up, and ask questions. We all have a voice and deserve to be heard.

I hope that each of you will find a silver lining in your diagnosis, because living with this disease is not easy. In my experience, the internet makes it sound a lot easier than it actually is. We all need something positive to focus on, especially on those really bad days.

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.