Why I Write About Rare Disease

Chronicling my rare disease journey is not only for me

Life with myasthenia gravis continues to be a journey of highs and lows, good times and struggles. Photo by Patrick Tomasso on Unsplash

I almost hesitated to publish another issue of the Live Life Rare newsletter. Who could blame me? The previous couple of issues were followed by unplanned trips to the emergency department that landed me in our university hospital for several days. In total, I’ve spent 32 days of the past few weeks hospitalized across three stays.

But then I ran across a quote this week from professor and author Brené Brown:

One day you will tell your story of how you overcame what you went through and it will be someone else's survival guide.
- Brene Brown

I’ve pondered these words, and they have brought me some clarity. Not only does writing about my rare disease experience help me process these events, but it’s also creating an archive of lived experiences that may well help others along their own journeys.

There have been times since my diagnosis in the fall of 2014 that I’ve had all MG symptoms under control to a large degree. Other times I’ve floated somewhere between being mildly inconvenienced to fighting for survival.

Throughout these stages, it would have been helpful to read about others who had walked this path — especially in the early years of my journey.

Rare disease is a very personal experience. Myasthenia gravis in particular can present in wildly different fashion among otherwise similar patients. And yet reading the experiences of others can help patients and caregivers understand what is possible, and perhaps be more prepared when circumstances change.

Just as important to the mission of this publication is the encouragement that I hope readers will take from these stories. MG has put my family and me through some tough times the past few years, and yet we have survived and drawn closer through the challenges. Among the things we’ve learned:

1. It’s hard.

2. You are not alone.

3. And you can get through this.

I love Brown’s concept of a “survival guide.” I don’t know if that’s an accurate label for what this newsletter seeks to be, but I do hope those who struggle with MG, rare disease, and the adversities of life in general, will find something here to help them move forward for one more day. That’s what I’m doing right now as I try to regain control of myasthenia gravis.

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If you know someone who needs encouragement in their rare disease journey, please share this newsletter with them. We’ll continue to encourage one another as we grow this community.

Question? Thoughts? Please share in the comments!

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