Andrea Divis was shocked to learn that her symptoms of fatigue, blurred vision, and muscle weakness were due to a rare condition called myasthenia gravis. Here’s how she educated herself and took back control of her mental and physical health.
Myasthenia gravis (MG) is an autoimmune neurological disorder that hinders the signals between the body’s nerves and muscles, causing muscles to feel weak and tire easily. It’s considered a rare condition, affecting 37 out of every 100,000 people in the United States.
MG often affects the mouth or face muscles, causing droopy eyelids, blurred vision, and slurred speech. MG can also affect muscles in the arms or legs.
People with MG can experience flare-ups when symptoms worsen, and in some cases, the condition can be progressive.
Some people with the condition only have mild effects, such as droopy eyelids when they feel very tired. Others may lose the ability to walk, talk, or even breathe properly. This can affect their ability to work, go to school, take care of a family, and overall quality of life.
Needless to say, the diagnosis, rarity, and physical challenges of MG can greatly affect a person’s mental health and self-esteem. Healthline spoke with Andrea Divis, who runs her own MG support group, to learn how the condition has impacted her, and get her advice for others with MG on how to stay strong in body and mind.
This interview has been edited for brevity, length, and clarity.
I am a unicorn with my diagnosis, in that I was diagnosed quickly and accurately. Many people are not so lucky.
I first noticed extreme fatigue around Christmas 2018. I was skiing and experienced some blurry vision which I attributed to the snowy, overcast weather. I took a selfie, and one side of my face looked like it was melting off. My initial thought was Bell’s Palsy — boy, was I wrong!
I met with my wonderful physician assistant 2 days later. He patiently asked questions, performed the ice test, and thought to run blood tests for MG. I remember he said, “I’m going to run a test. I’ve never seen anyone with this condition, but let’s rule it out.”
I received a call from him 4 days later: “I hate to call you on a Saturday, but you have myasthenia gravis,” he said.
The next few months were a whirlwind of tests, doctor appointments, and surgery to remove my thymus gland. Around
I didn’t have time to process my diagnosis until I was recovering from my thymectomy. I was sliced open across my neck, suddenly taking handfuls of medications, and dealing with the unknown.
That’s when it all hit me. How could I, someone who eats healthy and runs marathons, have MG? I was a boss lady, a mom, a fitness junkie — and now part of a rare disease club.
I felt like every way that I identified myself was stolen by this disease. I was in a pretty dark place for a while. I did not feel like myself, and my emotions were running wild. I had a swollen moon face, a droopy “pirate eye,” and my self-esteem was circling the toilet bowl.
At the beginning of COVID, I took a leave of absence from work. My symptoms were spiraling out of control, and my treatments needed to change. I had a lot of time on my hands to start educating myself about this disease. The more that I researched, the more my self-esteem improved.
However, I still experienced a roller coaster of emotions as I tried and failed numerous treatments. Each one that I tried, I held out hope that this would be the golden ticket. Eventually, I ran out of available treatments and was told, “You have to learn to live with this as your new normal.” That really hurt. I was not ready to hear it.
In retrospect, I needed to admit to myself that I had a chronic illness with limitations. I started seeing a therapist who helped me come to terms with my disease. My best friend has been my biggest cheerleader; other friends slowly pulled away. But she encouraged me to keep a healthy lifestyle and not give up.
In researching emerging treatments, I researched, applied, and qualified for a clinical trial. Was this my golden ticket? It was the first treatment I experienced a positive response from.
I sold my house, packed up my kids, and moved close to my family in San Diego to participate in the open-label portion of the trial, where participants are aware of their treatment. My family became a huge part of my support system.
I started to appreciate the things that MG gave me. I was able to spend quality time with my sons. I had time to relax, take long naps, decrease my stress, and enjoy California. My self-esteem and confidence were improving, and I needed a purpose.
Through the Myasthenia Gravis Foundation of America, I became an MG Friend, a resource for newly diagnosed people. It brings me joy to speak with other MG’ers and help guide them on their journey. Still feeling that I could give more, I launched a support group to help more people with myasthenia gravis.
My advice is to educate yourself, advocate for yourself, and care for your mental health:
- Educate yourself: Medical sites, social media, blogs, newsletters … any information that you can absorb.
- Be your own advocate: A great relationship with your doctors is critical for your care! Ask questions, get second opinions, and remember that doctors work for you.
- Most importantly, take care of your mental health: It’s normal to grieve your diagnosis, your previous life, and limitations — but don’t give in to negative self-talk. You choose how you see yourself.
- Talking about your MG journey can be healing: Utilize professionals, friends, family, support groups, or MG Facebook groups.
- Finding a support system is essential: Family, friends, neighbors, and support groups can each fill different needs.
My toughest lesson was learning to ask and accept help. Now is a great time to be diagnosed with MG, with new treatment options, information, and support.
Andrea Divis, 52, was diagnosed with generalized myasthenia gravis in 2019. Within two weeks of the start of symptoms, she received her diagnosis. Currently, she is participating in a clinical trial for treatment. She’s a mother to two adult sons and three fur babies, and resides in Oceanside, California. In her free time, Divis enjoys relaxing in her backyard, making charity quilts, and supporting other people with MG. To learn more about Divis’ myasthenia gravis support group, contact mgsandiegogroup@gmail.com