On Rare Disease and Getting Through the COVID-19 Pandemic Together

I have always said COVID-19 feels like the world’s rare disease. It is unrelenting. It requires us all to weigh risk daily before engaging in even the most mundane activities. It is unpredictable at best and still so misunderstood. And yet it is not rare, it is everywhere.

It felt like there were a few weeks in late June and early July where we could see life beyond the pandemic. These weeks were freeing and healing as we saw family and friends we had waited over a year to be with. Kids went to camp and we all felt more at ease that this may soon be behind us, but with the delta variant now surging it is clear we are still not at the end. This past week I have been filled with a sense of dread as I think about when and if we will need to go back into our own lockdown mode. The fall feels daunting as we face another school year with an even more contagious variant and I wonder how much more we can all withstand.

I should be used to this. I have lived this — having a moment of victory and celebration and then suddenly without warning sliding backwards. Of feeling hopeful that I may one day find a cure and other times feeling I have taken too many steps backwards to ever move forward again.

This is our backwards slide right now with COVID-19, but what is different and most upsetting is that while we are all living this shared reality I have never seen such a divide in our communities. When did people stop feeling a sense of responsibility to each other? When did people forget that their actions impact everyone? Too many people care only about themselves and are taking sides in a fight that will never be won if we are not united.

This is not how we cure rare diseases.

Even before I had a diagnosis, I had found private Facebook groups and patient centered non-profits built on the premise of supporting each other on our rare disease journey. It seemed strange at first, who are these people? But the support I found in them is like nothing I ever would have imagined. We are a community of thousands of people who fight together and for each other, we help guide each other to find the help we need and we laugh and cry and find hope in our shared reality. We mourn losses together and we cheer each other up on our darkest days. We give each other strength when we try new treatments and we fight for new science to cure us. We inspire each other to never give up hope. And we have learned our power is greatest when we are united and together.

We are not united in our country right now. We must be better. We must do better. We must learn from the rare disease community about how to fiercely support each other and never leave anyone behind. We must realize that we will only get through this when we do this together … when we feel a responsibility to each other and when we remember our actions impact others.

I know so many including myself who wake up daily in pain, living a reality that to most is unimaginable. We are used to facing an unknown future where all worst case scenarios are possible because we have lived them. And yet even with all of this we wake up hopeful and ready for a new day — a new fight. Ready to try anything that we can to ensure we live another day. This is resilience defined.

And yet right now, when I wake up and think about the pandemic I am losing hope. Losing hope about how many lives will be unnecessarily lost because we are not in this together. Science is catching up faster than we all could imagine-something rare disease patients dream of and yet none of this matters until everyone steps up and does their part. When will this happen? How many more people will have to die?