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…
Having a sense of purpose is innate to the human experience. It gives us direction, satisfaction, and motivation in the present as we build for our future. Purpose drives innovation, invigorates passion, and stirs the embers of better days ahead. Just as it breathes life into every day, a lack of purpose…
The emergency room has never been a particularly amicable place. It is an assembly point for people in discomfort searching for assistance with varying degrees of medical problems, from broken bones to food poisoning. However, if you have a rare disease like myasthenia gravis (MG) or a complicated medical…
When you live each day unsure if it will be your last. If you fear that the next time you walk outside and look up at the sky to feel the sun’s warmth on your face, it’s the final time you will do so unaided. Or if you don’t know…
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