Living with a rare disease can feel like constantly running uphill through many obstacles. There’s no finish line ahead, and the battle can feel never-ending. Yet, I have learned through many years of struggle that you have to celebrate the victories when you can.
I recently achieved a big milestone in my journey of stabilizing my myasthenia gravis (MG): I made it an entire year without a myasthenic crisis. An MG crisis is a life-threatening condition where the patient’s diaphragm quickly becomes paralyzed, and they lose the ability to breathe on their own. Profound muscle weakness throughout the whole body is common, and it often happens very suddenly.
I have had many MG crises over the years, too many to count. My condition was such that I was always in a flare and on the verge of hospitalization for years, even while on multiple forms of treatment. For a couple of years, I was averaging 4 to 6 hospitalizations a year. I spent so much time in our local hospital that even the dining staff knew me by my first name, not just the medical staff. Each hospitalization followed a similar pattern. I felt like I was living in the movie Groundhog Day. Our life was so chaotic and uncertain during that time; I truly never knew if I was going to make it.
So what changed? The primary answer is I moved my care to a different research hospital, and my new specialist added Soliris® to my infusion treatment. I discussed my intense infusion schedule in my last column, and having infusions every week has kept me more stable. I never thought I could make it an entire year without a crisis.
Read more about therapies for MG
In fact, I told my husband if I could make it we would get a cake and have a real celebration. I’m sure he thought I was joking. March 2021 was my last crisis, and the first week of April we bought a big chocolate cake from our favorite bakery and celebrated this huge achievement. It felt great to share the good news with family and friends also. They all remember those difficult years of constant hospitalizations.
Learning how to celebrate even small achievements has really helped me cope with the regular setbacks and challenges of living with a rare disease. It is always a battle in some way. Each day takes so much planning and so much rest just to be able to get through. I am extremely mindful of the minor and significant progress I make and look for ways to acknowledge and celebrate that progress. I also look for ways to find humor through all of it, the highs and the lows.
The victories may not stand out as much when remembering the long arc of the disease process, so it’s important to really sharpen and give them color to stand out in our memories too. Even when you feel like you’re just managing the bare minimum, that is a victory in itself. The daily, small victories create the long-term triumphs, and looking for ways to celebrate each one has really made all the difference.