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The Unexpected Outcome of COVID-19 That's Helped Me Feel Supported With a Rare Disease

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Editor's Note

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It’s day “I can’t even remember” of the COVID-19 lockdown, and we’re seeing so many changes within our communities, families and amongst humanity. Our communities and families are doing their part to help others who are the most critically impacted by this disease: the elderly, those with underlying conditions, and the immune compromised (many of us among them).

While our hearts ache to have that human interaction again, we all hunker down knowing it’s best to stay home. And we search for those interactions through other means.

Nearly four years ago, I was invited to join a small support group via social media for people who had been diagnosed with my rare disease, Mal de Debarquement syndrome (a disorder that leaves you feeling as if you’re riding on a boat), during the year 2016. The idea was we we’re all in the same “boat” (both literally and figuratively), navigating this chronic illness on a similar time schedule.

We had all been diagnosed, searched for treatments, tried many options to reduce symptoms and we could share our experiences together. We could celebrate our remissions (zero symptoms) or other accomplishments, and we could support each other through the more difficult days.

While the larger groups dedicated to our illness served many purposes, such as general research and support, the small group has been where I feel safe to share my personal story and ask the questions I may be nervous to ask in the past four years.

Amid this COVID-19 pandemic, we have seen humanity emerge in a variety of ways. From chalking sidewalks, to hanging objects in our windows to creating messages of “we’re in this together,” we’ve seen the positive emerge from this difficult time.

The same happened with our support group when, for the first time in four years, someone suggested we “meet” virtually and talk to one another about our illness. Something that has existed for years — video communication — has suddenly become our lifeline to the outside world. And while we have communicated via social media these past four years, there was something about hearing their voices, seeing their faces, hearing their stories, questions and fears in person, that made this community more “real.”

During this time of social isolation, I encourage you to reach out to those who may be living with the same chronic or rare illness as you. I know it helped me immensely to see those who share my similar experiences.

And for the first time in a very long time, my boat rocked me gently to sleep last night with a smile on my face.

For more on the coronavirus, check out the following stories from our community:

Originally published: May 1, 2020
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