By Marcia Lorimer, as told to Hallie Levine
I’ve lived with myasthenia gravis for 65 years. I was diagnosed when I was 10. Up until then, I was a very active child who went from playing every sport imaginable to suddenly feeling constantly exhausted. I began to choke on food, slurred my speech, and developed droopy eyes. This was back in the 1950s, so after my family doctor couldn’t find anything wrong, he suggested that I might be seeking attention. At first my parents just thought I could be trying to mimic Marilyn Monroe. It took several months -- and one hospitalization -- before I got the correct diagnosis.
Back then, there wasn’t much known about MG, and there were very few treatment options. But over 6 decades later, there have been major advances in research and treatment. It’s true that day-to-day management of MG can be unpredictable and sometimes challenging. Yet it hasn’t stopped me from pursuing a fulfilling career as a pediatric nurse practitioner and university professor, as well as raising a family. Here’s advice I give to other people living with MG, to help them live a full life:
Stay up to date on vaccines. For me, one of the biggest triggers of an MG flare is a respiratory infection. COVID-19 is such a looming villain out there for folks with MG, but even a respiratory infection like a bad cold or pneumonia can be a serious threat. I personally have been hospitalized in the past after a bout with the flu. Some shots to make sure you’re up to date on the COVID-19 vaccine (including your booster, if you’re eligible), influenza, pneumococcal, and Tdap (it protects you against pertussis, or whooping cough). Your family doctor will advise you on other vaccines as well.
Get the best medical care you can. They call MG the snowflake disease for a reason: it’s different in each individual, and no two people respond the same way to a treatment. I can’t stress enough how important it is to have a doctor who really understands MG. You can’t just rely on your regular family doctor. My late husband, Bill, was an internal family medicine physician, and he’d get patients with MG who wanted to see him because they knew I had the same disease. But that’s very different from going to a neuromuscular specialist who sees patients with MG every day.
I’ll give you a personal example: about 30 years ago, I had an unexpected terrible flare, and neither I nor my doctor, Donald Sanders at Duke University Medical Center, could quite understand why. Dr. Sanders reviewed my situation with other MG experts, did some research, and decided that even though I’d had my thymus removed as a child to treat my MG, some residual thymus may have remained or grown back to trigger symptoms. I had a second surgical procedure to remove it and got much better.
I might not have gotten the right treatment if I hadn’t had a doctor as knowledgeable about the disease and as committed as Dr. Sanders to getting me the best care. The Myasthenia Gravis Foundation of America (MGFA) has a physician referral list of MG experts so you can find a doctor in your area.
Have a strong support system. This is particularly important during times of big emotional upheaval, such as death or divorce. I had one particularly bad flare, for example, when both my father and sister-in-law died around the same time. What always made these stressful times easier was to have a wonderful husband who was constantly there for me. It’s so difficult to parent as a person with MG because sometimes you can’t participate or go to things that are important, like school functions or sports games, because you’re so exhausted. That’s why having someone who’s willing to step in and fill in for you is crucial.
Attending a support group is a great way to meet others with myasthenia gravis and learn about their experiences. The support groups are run by volunteers who are typically MG patients or family members of patients. MGFA also has patient education materials such as webinars and patient meetings that provide important information about MG, research findings, and various treatment options.
Be open to trying new treatments. Thankfully, with all the medical advances with treating MG, many people should be able to function day to day fairly well. It’s normal to have an occasional off day, but if you frequently feel like you need to crawl back into bed, that’s a sign that your medications need to be adjusted. No treatment works 100%, but you should be able to find something that works every day, all day.
Trust me, I know what it feels like to struggle: When I was first diagnosed, I was so weak I could only eat pureed food and couldn’t even speak. Thankfully, over the years, I’ve found treatments that work.
Try to think positively. It’s important to not give into the gloom and doom and instead look at what’s bright in your life. People who sit around and think clouds form around them to make it rainy every day usually won’t fare as well as others who try to find happiness around them. This will help you cope when the unexpected happens. The day I got married, for example, I woke up with double vision, a symptom I hadn’t had in years. It most likely was brought on from the excitement that surrounded my wedding. It would have been easy to become depressed, but I simply decided to make the best of it and closed my eyes before every photo, to conserve muscle strength. It worked. My eyes may have looked droopy in some of the photos, but I also looked happy, and that’s what matters.
Marcia Lorimer, MSN, RN, CPNP, assistant professor emerita of nursing, Duke University School of Nursing, Durham, NC.