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Finding a viable treatment option for a rare disease can be a long-term, frustrating struggle. Being rare, the disease itself is often poorly understood by the medical community, making it even more difficult to treat. Myasthenia gravis is an autoimmune disease, which means the immune system attacks healthy tissue —…

If I have learned one thing from life, it is that people always pass judgment. We judge things we think we understand, and sometimes we judge things we don’t even want to understand. I judged myasthenia gravis as a disease that can easily be treated and thought it wouldn’t…

Life with myasthenia gravis can be incredibly frustrating. At times, it feels like no one understands my battle and what I’m forced to go through just to lead a functional life. This frustration is especially emphasized when I attempt things that my peers do with a whole lot less effort,…

In the years since my diagnosis of a rare, incurable disease, I have learned about unspoken rules that have been thrust upon me and the social expectations that quickly follow.  Whether intentionally or not, there is a subtle, yet real, desire by others to see my health journey end…

When I see someone for the first time in a while, they sometimes ask me if I am better. I have to pause before answering. Being chronically ill means that this is a long-term condition and that I may never be “better.” A chronic condition is a disorder or disease that…

The house is quiet past midnight, yet I’m fully awake as usual, thanks to my many health issues. Nighttime is when everything comes alive for me — chiefly my pain and other symptoms, but also my creativity and visions for the MG community, my plans for the next day, and…

Few activities send endorphins rushing through my body like jogging. Exercise has many benefits, both mental and physical. This fact became apparent to me when I could no longer exercise due to weak and fatigable muscles caused by myasthenia gravis (MG). Before the onset of my symptoms, I…

Having a rare disease opens the door to many questions. It also presents the opportunity for well-meant advice that doesn’t always help the way it’s intended.  I get it — when you hear about someone’s struggles, you want to jump in and help fix them any way you can.

Struggling with physical and mental health is challenging. In my case, myasthenia gravis shined a light on underlying anxiety, and now I am in a relationship with both. I battle both muscle weakness and my own mind. Often, it’s difficult to determine which of the two is causing my problems.

Lately, I have been pushing myself beyond my limits. While I’m aware of this, I don’t want to miss out on anything. We recently moved, confronted major life events, and have been crazy busy at work. I haven’t been prioritizing my health, and yesterday, it all came to a head. I…