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Why COVID-19 Is Like the Rare Disease Roller Coaster I've Ridden for So Long

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On every roller coaster I have ridden on as a rare disease patient, there are lots of highs and lots of lows. The ride down is always fast, quickly taking away progress made, and the road back up feels endless. But for most of us, trusting that at some point that the ride will end, is what gets us through our hardest moments.

We’re almost one month in, and it is clear the COVID-19 ride is far from over in our current reality. COVID-19 is a new-to humans virus that causes respiratory infection and can lead to serious or fatal health complications.Today my trust in an end wavered. I can’t understand when this will end and how I will ever leave my safe space. New articles continue to be published in journals indicating how critical it is for steroid dependent populations to avoid this virus. It affirms our extreme precautions are worth it — but makes it hard to imagine how the world will ever be safe.

As a mast cell disease patient, daily life is always full of dangers that can set off a reaction. I am used to being constantly aware of my surroundings to avoid running into a trigger — heavy perfume, cleaning products, scented candles and specific foods. I have gone to Target in a mask and gloves for years — one of the few places I refuse to give up going despite it often making me sick. For the last six years I spent every ounce of my being trying to heal enough to enter “normal life” again, to help gain back the many many things I have lost, like the freedom to eat what I want, traveling or going to a restaurant with friends for dinner.

It has been a long ride — six years and counting — and while I am not off of this yet, I was starting to see the end. It will never be the same as it once was. I will always have to give my body time to recover from new adventures, and I will never eat in a restaurant again. I don’t mind though. In the last year I found a way to be among the living, in a way that for years never felt possible. It led us to Disney World in the fall, to Broadway shows and events in the city, and even the courage to book a trip to California, which is where we should have been today.

But in this month mark on this new rollercoaster ride, I am having a hard time even knowing how it could possibly end. How I could get back the freedoms and adventures I had just fought for and won? The thought of having to start over feels crushing, but the thought of getting COVID-19 feels worse.

I can’t stop thinking about our NICU life. I had a notebook that I wrote in daily– notes from rounds each day and a daily count. I have a new notebook now, our school schedule and a daily count. It feels oddly similar to again be recounting our days in a notebook. But I remind myself that even when the NICU felt endless, like it would be impossible to get home, we finally did.

I try to tell myself that it is OK to not see the end of this ride, to know we are all doing what we need to be doing, and that will lead us to where we need to be when this is over. So I am again challenging myself to take a deep breath, throw my hands in the air, and enjoy the ride. And know that I can’t wait to see you all when we finally get off!

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

This story originally appeared on A Rare Normal

Originally published: May 1, 2020
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