The Year the World Got a Taste of Life With a Rare Disease

In 2020, the entire world was given a taste of what it’s like to face a rare disease. Without warning, everyone was forced to go inside — forced to wait for science to begin to understand what this virus was. Our entire world was flipped upside down — not knowing what was safe to do in our daily routine, who we could see and where we could go. Too many patients have died and continue to die waiting for science to catch up to save them. And those who have been lucky enough to recover may forever be impacted by the lasting effects of this devastating virus.

As a rare disease patient, over and over again, this year I have watched everyone begin to live like me. To be forced to take new precautions to stay safe, stop traveling, stop gathering in large groups, celebrate holidays differently and wear masks. And I have also seen the world feel the isolation and loneliness from months of quarantining, the fears and stress of getting sick, or worse, dying from something they do not know how to save you from, and the strong feelings of loss and grief for all that has been taken from us.

But I would also like to think the world has learned lessons the rare disease community learned long ago — to be grateful for each good day, to cherish any time you have with family and friends, to take life a day at a time or even an hour if you need to, to improvise and fight to find new ways to feel alive, to celebrate your victories no matter how small, to find hope even in our hardest moments and to support each other with empathy and kindness.

As 2021 arrives, I know we are all hopeful for a better year, for more questions answered and cures found, for normalcy to return. But rare disease patients know it is never that simple. Our battle is not done yet — our roller coaster ride is still not over. If I am being honest, I probably have a harder time than most believing this will actually fully end and disappear. Perhaps after decades of being a rare disease patient I have learned to manage my expectations for cures. Because that is where the pandemic and the rare disease life differs. We will see an end to COVID-19, but I know a cure is never a guarantee for me and that I will carry my diseases with me well beyond 2021.

I hope the world will remember that there are months to wait, not years, and while it is hard no doubt — and we are all tired of this pandemic life — for most this is not your eternity. My hope for the new year is that our world works together to get through these coming months. We all have a role in ending this and our actions can literally mean life or death for people in our community. But I also know strength comes from each other and that together we can help carry each other to the other side of this. I would like to believe we’ll end up in a better world than when it began. I hope next year we can say 2021 was the year we helped each other find our “normal” again, but a better normal grounded in community, support and resiliency.