Each new year brings opportunities to think about setting goals and hopes for the coming year. Many people create resolutions to focus on, but this year I’m thinking more about how this new year is another chance to reorient my thinking about my disease and find new paths toward acceptance as I continue to learn to live with my rare disease.
My experience living with neuromuscular disease for nearly 10 years has been in a constant state of flux. My symptoms and condition are constantly changing, and I have had to learn how to readjust my expectations about what I am able to do. Myasthenia gravis (MG) can vary from day to day and year to year. It has been a constant learning process to find ways to adjust, adapt, and accept where I am at. It can be frustrating having to deal with that variability. Yet accepting that variability as part of life helps me find peace. It helps remind me to rest and pace myself.
Read about HCP resources for MG
The idea of acceptance is counterintuitive in cultural narratives about illness and disability. We see so many stories about “overcoming” or “defeating” disease and disability. Unfortunately, these stories are often used as one-dimensional inspiration and do not represent what it is like to actually live with a disability. They can be damaging for those of us who live every day and every moment with a life-limiting illness. Seeing disease as something to constantly work against or even viewing it as an adversary can create frustration. It did for me.
I used to view my body as the enemy and tried to live a life beyond my physical limitations each day. That only made my disease worse and created an endless cycle of disappointment. I used to be a workaholic and applied that to how I coped with my disease as well. Learning how to accept illness and create an authentic life where I can live within my physical limitations instead of constantly pushing against them has helped me manage my disease and live a better life.
Acceptance does not mean “giving up.” I still have goals, ambitions, and drive. I still push myself to increase my strength, try new treatments to gain more function, and seek out ways to better manage my symptoms. I am always hoping to regain the independence I have lost. Acceptance means I continue to strive toward that but also work with my body and its needs instead of working against it. It is a process of growing resilience and strength, accepting the present while continuing to have hopes for days ahead.
There is always so much chaos to deal with when it comes to rare diseases, but acceptance is a way to find peace while charting a course through the storms. This year I am going to continue to find ways to accept my illness and my limitations while also celebrating what I am still able to do and hope to continue to do in the future.