Well-Being in Work, Social Life, and Family

Well-Being in Work, Social Life, and Family

Living Well with Myasthenia Gravis: Embracing a New Reality

By Lisa Plymate, MD, as told to Keri Wiginton

At the age of 75, I’ve come to realize that life is filled with experiences and opportunities. Although I wouldn’t have chosen to be diagnosed with myasthenia gravis (MG) just before turning 70, this condition has unexpectedly enriched my life. The MG community, with its wealth of insight and support, has become an invaluable source of knowledge and inspiration. As a retired internal medicine doctor and geriatrician, I’ve witnessed the profound impact of this condition beyond its medical aspects.

During a recent support meeting, I posed a question to the group about finding gratitude in the face of MG. Their response deeply moved me. Many expressed joy in discovering a new world within the community. They spoke of the special closeness they developed with loved ones after their MG diagnosis. This bond, born out of shared experiences, became a source of gratitude and strength.

If you or someone you know is living with MG, here’s what I’ve learned about navigating this condition and living well:

Accept Your New Reality

Understanding that your body operates differently due to MG is key. Fatigue is a common symptom, independent of muscle weakness. Until recently, not enough attention was given to how fatigue affects overall well-being. Personally, even when my eyelids are not drooping, I find myself needing twice as much sleep as before. It can be frustrating to have fewer productive hours in the day.

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Additionally, MG fatigue can strike unexpectedly, even after seemingly simple activities like writing emails or reading a book. Prioritizing sleep and becoming aware of your energy patterns are crucial strategies. Many individuals with MG find that they have more stamina in the first half of the day. By scheduling tasks and errands accordingly, you can optimize your energy levels. It’s also important to consider environmental factors like heat, as it can trigger MG symptoms for some. Adjusting your plans to cooler times of the day can help mitigate any discomfort.

Be Open About Your Needs

Informing your friends, family, and coworkers about how MG affects you is essential. By communicating your limitations and requirements, you can foster understanding and support. While it may not be necessary to divulge all the specifics to everyone, sharing your struggles with trusted loved ones creates a network of support. However, it’s worth noting that comprehending the impact of MG can be challenging for others, particularly when symptoms are invisible. If someone becomes frustrated, it’s important to emphasize that prioritizing your mental health and emotional well-being is vital. Polite redirection or a change of topic can often diffuse tense situations, allowing for more compassionate interactions.

Create Your MG Community

Finding support through like-minded individuals who understand your experiences can be tremendously beneficial. Organizations such as the Myasthenia Gravis Foundation of America (MGFA) provide valuable resources, both in-person and online. I’ve actively participated in their programs, such as the regional support groups and the national MG Friends mentorship initiative. It’s remarkable how people within the MG community possess insights that go beyond medical advice. Engaging with these groups has been instrumental in managing my well-being with MG.

Finding Well-Being at Work

While MG may alter your career path, there are still countless opportunities for fulfilling work. Discussing necessary accommodations with your employer is crucial, as the Americans with Disabilities Act protects your rights. It’s important to recognize what your body needs and explore professions that align with your capabilities. Not everyone has to retire like I did, but it’s crucial to find what works best for you while managing MG.

Stay Safe and Socialize on Your Own Terms

The recent years, particularly the COVID-19 pandemic, have heightened concerns for individuals on immunosuppressant treatments, like many with MG. Prioritizing your health and taking precautions such as wearing masks and maintaining safety measures can help alleviate worries. Carrying essential medical information and ensuring its accessibility can provide an additional sense of security during outings. Despite these considerations, it’s important to maintain social connections in a way that aligns with your well-being. Whether it’s inviting loved ones over or visiting family members, finding the right balance between safety and socializing is essential.

Living with MG may require adjustments, but it doesn’t diminish the opportunity for a fulfilling and enjoyable life. Personally, I may not be able to participate in certain activities, such as extensive biking trips, anymore. However, I’ve discovered new passions, such as spending time in my garden, enjoying cultural events like opera and theater, and even taking up needlepoint. Embracing a new reality opens doors to different experiences and allows us to appreciate the richness that life still has to offer.

In conclusion, my journey with myasthenia gravis has taught me invaluable lessons about resilience, gratitude, and the power of a supportive community. By accepting our new reality, openly communicating our needs, establishing connections within the MG community, finding purposeful work, and prioritizing our well-being, we can live fulfilling lives despite the challenges of this condition. Remember, MG doesn’t define us; it is but another chapter in our journey.