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Recently my myasthenia gravis (MG) specialist said something to me while we were discussing possible treatment options that changed how I view my role as a patient and gave me more agency. I told my doctor I did not want to do any major treatment changes right now, fearing a negative response or being labeled noncompliant. She responded that future choices about treating my condition will involve “shared decision making.” Hearing this from my doctor who treats my specific rare disease was an important reminder that I am an active participant in making decisions about my condition and quality of life. 

I have found it difficult as a rare disease patient with a refractory form of MG to balance being compliant with the doctor’s suggestions and being able to choose when to reject an option or ask for more time to evaluate that treatment option.

I see many different specialists and undertake treatment to manage multiple conditions. It’s been a long, challenging road to find specialists able and willing to help me and not just dismiss my symptoms. That is always in the back of my mind.

Decisions about treatment can be an overwhelming part of managing rare diseases. It isn’t just about side effects but also considerations about cost, scheduling, effects on caregivers, etc. Part of the reason I am resistant to making any major changes right now is I’ve been dealing with intense medical burnout for almost a year.

After having thymectomy surgery last year on top of my 8 or more infusions a month, regular appointments, and the constant daily work of managing my care (all with the added stress of a global pandemic), it has all felt much more overwhelming than usual. I find myself struggling to do the simplest tasks. Trying new treatments can have great rewards but also can come with significant risks as well. 

Read about HCP resources for MG

I have done many many treatment changes over the years. Some were winners. Some were spectacular failures. I think it’s important patients and their families feel they are able to manage the risks before they try a new treatment. There are always tweaks to my care and treatment happening all the time, but choosing to make huge treatment changes requires very careful consideration. 

This year, my condition has declined a bit, but still, I have chosen to stay on my current treatments and not try to make any major changes. I mentioned in a previous article that I have made it an entire year without a myasthenic crisis. I do not want to risk making any huge changes and then triggering a crisis. Even though my life is still limited because of my condition, my symptoms are more stable than they have ever been. I have been able to capitalize on that and do a little more in life.

Hearing the phrase “shared decision making” from a specialist is incredibly powerful for patients, especially rare disease patients who have to work so hard to get a diagnosis and find specialists who can help them. Every patient should be able to know that they are active participants in the choices about their medical future, and they are allowed to measure the entire scope of their lives against the weight of trying new treatments.

I am grateful that I can choose to stay in this holding pattern for a while with my MG treatment. I know that things always change, and I’m ready for that. But being able to choose to maintain this level of treatment for now and enjoy life as much as I can is exactly what I want to do, and I feel freer to say that now to my medical team.