By Lisa Plymate, MD, as told to Keri Wiginton
At 75, I’ve come to understand that life is filled with various experiences and opportunities. My recent diagnosis of myasthenia gravis (MG) just before turning 70 may not have been something I would have chosen, but it has allowed me to learn and help others with this condition, which has greatly enriched my life.
I rely on both my MG community and my healthcare team for support. As a retired internal medicine doctor and geriatrician, I am impressed by the insight and knowledge of my fellow MG patients. What I learn from them goes beyond the strictly medical information I receive at the doctor’s office.
During a recent support meeting, I asked the group how MG can inspire gratitude. The most common response inspired me. The group expressed joy in the newfound sense of community they discovered through their MG diagnosis. Many mentioned feeling grateful for the special closeness they developed with friends and family after their diagnosis.
For those who have MG, here are some of the lessons I’ve learned about living well with this disease.
1. Accept Your New Reality: Recognize that your body functions differently now, especially in terms of fatigue. Nearly everyone I speak to with MG tells me they experience significant tiredness, regardless of muscle weakness. Fatigue, both physical and mental, has been overlooked by MG doctors for a long time. Personally, even though I may not have drooping eyelids, double vision, or difficulty getting up from a chair, I require twice as much sleep as I used to and occasionally need an extra nap. It can be frustrating to have fewer productive hours in a day. MG fatigue can strike suddenly and without warning. You might expect to feel tired after physical activity or socializing, but you may be surprised to experience fatigue after activities like writing emails, reading, or watching engaging television programs. My advice is to prioritize sleep and become familiar with your energy patterns. For example, people with MG often have more stamina in the first half of the day. If this applies to you, consider accomplishing errands in the morning or exercising shortly after waking up. Additionally, try to plan outings for cooler hours of the day, as heat can trigger MG symptoms for some individuals. Personally, I avoid direct sunlight as much as possible, preferring to seek out shade instead of sunlight while walking down the street.
2. Be Open About Your Needs: Communicate with your friends, co-workers, and family about how MG impacts your life. Help them understand why you may take longer to complete tasks or need to schedule activities and chores further apart. Be honest about your need for rest or a mid-day nap. You may not feel comfortable discussing all your symptoms with everyone, but it’s essential to have a support system in place. Personally, I am grateful for the support and understanding of my husband, daughters, grandchildren, sisters, and other loved ones who listen to me and offer their assistance during challenging moments. However, it can be challenging for spouses and others to fully grasp the extent of what you’re going through, especially if your symptoms are not obvious, such as breathing difficulties or difficulties walking. You may encounter people who question or doubt your need for more rest. In such situations, it’s important to politely explain that your mental and emotional well-being, as recommended by your doctor, takes precedence. If necessary, change the topic of conversation or remove yourself from the situation. You might be surprised by how quickly people can adjust their behavior when you ask for some compassion. Try saying something along the lines of, “This is a stressful situation. As someone with MG, I am supposed to avoid stress. Let’s discuss something more positive instead.”
3. Create Your MG Community: I have been an active member of the Myasthenia Gravis Foundation of America (MGFA) for a long time. Shortly after my diagnosis, I discovered their website, and since then, I have engaged with both in-person and virtual support groups specific to my region, the Pacific Northwest. Additionally, I participate in a national MGFA program called MG Friends. As a mentor, I provide support and guidance to others in the MG community through phone conversations, sharing my personal experiences to help them navigate their own journeys with MG. This includes individuals who have recently been diagnosed, those who have been living with MG for some time, and caregivers seeking advice. While support groups may not be suitable for everyone, I have found the opportunity to connect with people who truly understand what I am going through to be immensely helpful. Often, they possess a deeper understanding than neurologists and can offer practical tips for managing well-being while living with this disease.
4. Finding Well-Being at Work: Having been an internal medicine doctor for many years, I truly enjoyed my career and found it to be incredibly rewarding. However, I retired from medicine a year before my MG diagnosis, and I do not plan on returning. Despite encouragement from others, I am aware that the demands of my job are not compatible with MG. My altered sleep patterns and the need to pace myself throughout the day make it impossible for me to continue practicing medicine. However, there are numerous jobs that individuals with MG can pursue successfully. It’s crucial to have a conversation with your employer about any necessary accommodations. The Americans with Disabilities Act protects your right to request modifications in your job to ensure your success.
5. Stay Safe and Socialize on Your Own Terms: The past few years have been challenging for everyone, and the pandemic has heightened concerns for individuals like me who are on immunosuppressant drugs. I continue to wear a mask at group gatherings and take other safety precautions to safeguard my health, which provides peace of mind. I always carry my medical card and wear a medical bracelet, and my health information is readily accessible on my smartphone. This way, if an emergency occurs and I am unable to communicate, people will have the necessary information to help me. While I have become more cautious since the onset of COVID-19, I still socialize with others either at home or their places with proper safety measures in place. Family plays a significant role in my life, and when I visit my daughter, son-in-law, and three grandkids on the East Coast, I have a neurologist available. Living with MG may restrict certain activities I used to engage in, such as biking long distances, like the 25 to 40 miles a day I did on an Italian biking trip with my husband just six months before my diagnosis. However, I continue to lead a fun and fulfilling life. I am still able to walk my dogs independently and spend time in my garden. Additionally, I take pleasure in attending opera, ballet, symphony concerts, and theater performances. I recently took up needlepoint, and now my entire family has new pillows.
Living with MG presents its challenges, but with understanding, support, and proper management, it is possible to lead a life that is full of joy, fulfillment, and meaningful connections.