By Lisa Plymate, MD, as told to Keri Wiginton
At 75, I’ve learned life is full of experiences and opportunities. This illness is just another one. I wouldn’t have chosen to get a diagnosis of myasthenia gravis (MG) just before turning 70. But knowing and helping other people with this condition has enriched me.
I turn to my MG community as much as I do my health care team. And as a retired internal medicine doctor and geriatrician, I’m impressed by their insight. What I learn from them goes much deeper than the straight medical info I get at my doctor’s office.
In a recent support meeting, I asked how MG might inspire gratitude. The most common answer inspired me. The group expressed joy in finding a new world in each other. Some said they felt thankful for the special closeness they now have with friends and family, a bond that came after their MG diagnosis.
If you or a loved one have MG, here’s some of what I’ve learned about how to live well with this disease.
Accept Your New Reality
Understand that your body works differently than before your symptoms started, especially with fatigue. Almost everyone I talk to with MG tells me they get tired a lot, regardless of muscle weakness.
Until recently, MG doctors haven’t paid much attention to how fatigue, or a general lack of physical and mental energy, impacts well-being.
But even though my eyelid isn’t drooping, I’m not seeing double, and I can get up fine out of a chair, I still need twice as much sleep as I used to and sometimes need an extra nap. To have fewer productive hours in the day is frustrating.
And MG fatigue can hit you fast and without warning. While you might expect to get tired after you do something active, including exercise and socializing, you might be surprised to find that fatigue may also happen after you write a lot of emails, read a book, or watch engaging TV.
My advice: Prioritize sleep and get to know your energy patterns.
For instance, people with MG generally have more stamina in the first half of the day. If that sounds like you, consider running your errands in the morning or exercising shortly after you wake up.
And try to time your outings when the weather is cooler. Heat can bring on MG symptoms for some people. The sun is a big issue for me. I used to walk down the street seeking out spots of light and warmth. But now it’s the opposite. I zigzag down the sidewalk and cross over in search of shade.
Remember that you may sometimes get delayed fatigue or a sudden rush of tiredness, even when you think you have enough energy to finish that sprint or make that fancy meal. Give your body and muscles a chance to recuperate when that happens.
You might not need to sleep. Just lie flat for 15 to 30 minutes to see if you feel better. This may give you several more hours of energy to enjoy the rest of your day.
Be Open About Your Needs
Tell your friends, co-workers, and family how MG affects you. Let them know why you may take longer to finish tasks or need to space out activities and chores. Be honest about your need to lie down or take a nap in the middle of the day.
You might not want to open up about all your symptoms with everyone. But I’m grateful to my husband, daughters, grandchildren, sisters, and other loved ones who support me and listen when I vent my troubles.
But it can be difficult for spouses and other people to grasp what you’re going through, especially if you don’t have obvious symptoms such as trouble breathing or walking. You might find that not everyone accepts your need to rest more often.
If people get frustrated with you, or vice versa, tell them that a doctor said your mental health and emotional well-being are a top priority. Then politely walk away or ask them to talk about something else.
You might be amazed by how quickly people can cool down and back off when you ask for some compassion. Try saying, “Hey, this is stressful. I’m supposed to avoid stress with my MG. Let’s change the subject to something more pleasant.”
Create Your MG Community
I’ve been a part of the Myasthenia Gravis Foundation of America (MGFA) for a long time. I found their website pretty quickly after my diagnosis. Since then, I’ve used the group to connect with in-person and virtual support groups specific to the Pacific Northwest.
I’m also part of a national MGFA program called MG Friends. As a mentor, I talk to people on the phone and try to use my experience to help them however I can. I advise different types of people in the MG community, including the newly diagnosed, people who’ve had MG for a while, or caregivers who have questions.
Support groups aren’t for everyone. But I’ve found it helpful to talk to people who know what I’m going through. They often understand more than neurologists and have more meaningful tips for managing well-being with this disease.
Finding Well-Being at Work
I was an internal medicine doctor for decades. I had a lot of fun in my career, and the work was tremendously rewarding. But I retired from medicine a year before my diagnosis. And I don’t plan on returning.
Plenty of people have urged me to return to work since the pandemic. While I know doctors are needed, I couldn’t do that job anymore with MG. For starters, I get up later in the morning and need more sleep than I used to. But I also need to pace myself too much throughout the day.
I’m happy to stay retired, but there are many jobs you can do perfectly well with MG. And people with this disease go on to accomplish great things. You just have to figure out what’s best for you.
Talk to your employer about any accommodations you might need. The Americans with Disabilities Act protects your right to ask for job changes to help you succeed.
Stay Safe and Socialize on Your Own Terms
The last few years have been difficult for everyone. But the pandemic made the outside world a lot scarier for those of us on immunosuppressant drugs. And I still wear a mask to group outings and take other safety precautions to protect my health, which gives me some peace of mind.
For example, I always have my medical card and bracelet on me, plus anyone can access my health info on my smartphone. That way if something happens to me and I can’t speak for myself, people will know how to get help for me.
I’m more cautious since COVID, but we still have people over or go to friends’ houses. Family is also huge for me. And when I visit my daughter, son-in-law, and three grandkids on the East Coast, I have a neurologist there.
If you have MG, you might not be able to do everything you could before your diagnosis. For instance, I no longer bike 25 to 40 miles a day, something I did on a weeklong Italian biking trip with my husband only 6 months before my diagnosis. But I have a fun and fulfilling life.
I still walk my dogs on my own and spend time in my garden. And I enjoy opera, ballet, symphony, and theater. I also took up needlepoint. And now everybody in my family has new pillows.
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SOURCES:
Lisa Plymate, MD, retired internal medicine doctor and myasthenia gravis advocate, Seattle, WA.
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