A Nurse’s Journey With gMG: From Caregiver to Patient

Credit: Adobe Stock/DavidPrado

In honor of Myasthenia Gravis Awareness Month, The Educated Patient spoke with William, a dedicated nurse supervisor, military veteran and passionate woodworker who is living with generalized myasthenia gravis (gMG). As someone who has spent his career caring for others, William brings a unique perspective to life with a chronic illness — navigating his own diagnosis while continuing to lead a hospital team and support his family. In this inspiring conversation, he shares how gMG impacted both his work and personal life, how treatment helped him regain strength and why resilience and advocacy are key for anyone facing a new diagnosis.

Can you tell us about your role as a nurse supervisor and what drew you to a career in nursing?

William: My mother is a veterinarian and my father was a high school teacher — now a retiring physician’s assistant. There is also an extensive history of military service in our family, including my grandfather, mother, brother and myself. The service of others is something well ingrained in my family, and I have always known that I wanted to do something in the medical field. My family has dealt with medical challenges like cancer and diabetes, and my mother and aunt also have gMG. They definitely set a standard for not allowing a medical condition to impede my endeavors.

How did your experience as a health care professional shape your perspective on patient care before your diagnosis?

William: At the hospital as a nurse supervisor, I lead an amazing team, and I always want to make sure patients get the best care possible. I've prioritized clear communication in patient care, which helped me navigate my own diagnosis and treatment journey.

As someone trained in health care, what went through your mind when you started experiencing symptoms like fatigue and speech issues?

William: As a nurse supervisor, my job requires me to be on my feet for long hours, constantly moving around to assist patients and support my team. Eventually, during those long shifts, I began experiencing gMG symptoms such as profound fatigue, speech difficulties and challenges with basic physical tasks such as walking. These symptoms severely impacted my ability to perform duties and maintain the active lifestyle my role demanded.

My symptoms took an emotional toll on me, as I had to adjust to new limitations. I had to learn how to pace myself, manage my energy and plan activities so I wouldn’t overdo it. This experience has taught me to be flexible and resilient in adapting to life with a chronic condition.

Even though gMG isn’t usually hereditary, my mom and aunt have gMG, so I kind of knew what to expect. It helped me wrap my head around the diagnosis quickly. Plus, being a nurse myself, I had a pretty good grasp of the complexities of the condition. There were times I actually knew more about it than my doctor, which meant I could really advocate for myself. This knowledge helped me avoid a lot of the misdiagnosis issues that often come with conditions like gMG.

How did gMG affect your day-to-day life, both professionally and personally?

William: Before I started experiencing symptoms, I enjoyed woodworking in my free time. In my workshop, I enjoyed getting creative and making unique furniture and other crafts to auction off at different organizations and for my friends and family. Both woodworking and my nursing job are more than just roles — they are my passions and a big part of who I am.

I was hit hard by fatigue and had trouble speaking, especially during my long shifts as a nurse supervisor. Even simple things like walking or climbing stairs were tough, which was a real hit to my independence. Speaking at the end of a long shift became so difficult that I couldn’t form words, and it was clear something was wrong. My gMG also impacted my grasping strength in the wood shop.

Can you talk about the treatment that helped you regain strength and participate in daily activities again?

William: After my diagnosis, I tried several treatments that provided me with some relief, but they were not sufficient enough to manage my symptoms effectively. My doctor then prescribed me Rystiggo (rozanolixizumab-noli), and switching made a significant impact for me. I was able to re-engage with activities I love, which was a huge win for me personally.

Overall, my journey has been transformative, teaching me the value of perseverance. This has allowed me to focus more on my family and passions. As a dedicated parent to a very energetic 12-year-old, I take pride in being an active participant in her life, from bringing her to dance classes and sports events to supporting her in all her endeavors. We hope to get out and bike ride together as well as start backpacking this year!

I’m still managing my gMG, but my experience at work has improved. I also feel more productive in the woodshop. This has been my experience, but results can vary per patient.

What would you say to others newly diagnosed with gMG who might feel overwhelmed or discouraged?

William: Living with gMG requires resilience. Keep a positive outlook and celebrate the small wins and progress, because they can keep you motivated to keep pushing forward. I recommend joining support groups or online communities. Sharing experiences and advice with others who understand your journey can provide much-needed encouragement and support. Learn as much as you can about gMG. Understanding the condition makes it less scary and helps you take control. Also, it's important to talk to your doctor about all the options available to you and the benefits and risks, and work together on a plan to manage your gMG.

How has your experience with gMG changed the way you connect with patients as a nurse?

William: I'd have to say one of the primary ways in which my experience with gMG has affected my relationship with my patients is that it has given me a more personal insight of how dysfunction and handicap affect the individual being afflicted. One of the primary symptoms that I had to deal with was aphasia, which made communication very challenging while dealing with my co-workers and patients.

As I've said before, I am very blessed to have an amazing team that l work with that are very understanding when I have issues with my speech. However, there is still a frustration when one is trying to make themselves understood and no matter what you do, you physically cannot get your body to make the sounds you are desperately trying to make.

No matter the understanding there is still a sense of failure and hopelessness that cannot really be assuaged. This has given me quite a potent insight into how my patients can be feeling when we are trying to help them in their times of need.

As a nurse, there are times when patient care can be challenging due to temperaments and reluctance toward necessary care modalities. As nurses, we are trained to see the world from the perspective of our patients and to understand the challenges they are having to deal with during their time in our care. There is no better instruction [than] personal experience, and my journey with gMG has definitely given me the opportunity to see the world of health care through a patient's perspective, giving me the ability to understand that struggle more effectively.