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…
Hope is an empowering word with an ambiguous interpretation. For each person, hope might look just a little different, but its crucial need in our lives remains integral. When I was first diagnosed, I thought of myasthenia gravis and the emotional, mental, physical, and even spiritual journey…
This past weekend, I attended my doctor’s “special patient day,” a morning event with tea, snacks, and entertainment by local musician Joshua na die Reën. The staff from my doctor’s office was there, including the nurses who take care of me during day treatments and chemotherapy, administrative staff, and the women who assist…
The diagnostic process and the journey to correct a disease by effective treatment can seem linear on paper. The reality rarely matches up. In that reality, many with myasthenia gravis become aquatinted with emotional and mental fatigue, the uncertainty of where to place trust, and the weariness of…
Like most chronically ill people, I often get the line, “I don’t know how you do it.” To be completely honest, nor do I. I just do exactly as healthy people do. I wake up, get up, survive, and go to bed. On some days, I have an emotional breakdown in…
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