A Love Letter to Long COVID

and a plea for collective grieving

The entire world experienced the pandemic. It is rare for such a universal occurrence to bless our earth. For a moment in time, we were all in it together.

Five years later and most of us just want to move on. Many of us want to forget. Some of us want to believe it didn’t happen. As a country it feels like we are trying to suppress it. To dissociate so we don’t have to face the pain of what we all just went through. To go back to how it used to be.

People living with Long COVID remind us that we cannot go back and we must not forget. Because it did happen and it’s still happening. 1.2 million people in the U.S. did die. Tens of millions are suffering from Long COVID and all of us are in some way or another dealing with the aftermath. We can never go back to a time when this did not happen. We can only go forward.

I was diagnosed with breast cancer in July 2020. My experiences of cancer and COVID are intimately intertwined. For a long time, I wondered when my life would go back to normal. Then I finally realized that my life would never go back to how it used to be. It was impossible to go back to a time before I had cancer. Before COVID. Once I realized this, everything changed.

Once I realized this I knew in my bones that the only way out was through. And if I could go through the pain and infuse it with love then I could come out the other side more whole than ever. Going through it alone is hard. Doing it together helps.

I once took part in a communal grief ritual. I didn’t know I needed to grieve anything and while in it I wasn’t exactly sure what I was grieving. But tears, pain, and sadness poured out of me until I felt completely empty. All around me people were crying and raging in their own way. I didn’t know what any of them were grieving for and it didn’t matter. Then we all started to come back to ourselves and then we danced. I filled the empty cavern inside of me with movement, joy, connection, love, and the sweetness of being alive in a body.

Unprocessed grief will come out sideways if we are unwilling or unable to metabolize it, to integrate it, to move through it. The collective grief of the pandemic is already coming out sideways and will continue unless we choose to grieve together and move forward in love.

In America there are some traumas we are more willing to remember. The National Mall is full of war memorials to honor those who lost their lives fighting for the ideals of American freedom. In New York City, in place of the twin towers there is now a monument that reminds me of the gaping hole in our hearts created by loss. 9/11 remembrances call on us to never forget.

A few months back my mom visited and we went for a walk on the National Mall. The instant we walked into the Vietnam war memorial I started crying. I had been having a normal conversation with my mom and it just hit me. I have no personal connection to the Vietnam war, but I do have a human connection to suffering. The act of remembering, and being around others who are remembering, touched my heart.

People living with Long COVID remind us that we cannot go back and we must not forget. We can only go forward. And if we are willing to move through the pain and grief as a nation we have the potential to learn and grow. We have the potential to live up to those lessons we thought we could learn in the brief period when we were all in it together.

And we must not abandon those with Long COVID. We do not understand Long COVID. We don’t know what it is doing in our body to wreak such havoc. Long COVID is a hard and complex thing. It comes and goes, it shows up in different ways for different people. In America, when we put our collective effort into something we can surely achieve it. We must commit to grieving the loss of the pandemic so we can commit to solving the challenge of Long COVID. If we refuse to do this and insist on moving on and putting it all behind us, we will abandon tens of millions of people and forgo the opportunity to fundamentally transform our understanding of the human body and complex chronic conditions.

For the brief moment when we were all in it together we were willing to stay home, wear masks, and get vaccinated for the collective survival of our species. Then it splintered. The most optimistic interpretation I have is that our love of life and our desire to be connected to each other was so strong we couldn’t deny it.

Today most of us who survived now have our lives back, have our freedom back. We can gather with loved ones, feel the energy of crowds, and travel across the globe.

People with Long COVID also want their life back. They want to move their bodies. Think clearly, learn, produce, and be creative. They want to spend time with friends. Travel to see family.

My deepest desire in this moment is that we grieve together and our collective love of life and primal desire to be connected to others be the driving force that shapes our new normal.

Thank you to everyone living with Long COVID for being our collective memory. I am sorry you must carry this burden, but I am eternally grateful for you.

Note: Since 2022 I worked with a team that coordinated the federal response to Long COVID from the Department of Health and Human Services. I was the Deputy Director and creator of the Office of Long COVID Research and Practice. We worked with hundreds of federal colleagues, patient advocates, clinicians, researchers, and public health professionals to find solutions to Long COVID across all aspects of life. In April 2025 the office was abolished, and my position was eliminated as part of the federal Reduction in Force led by the Trump Administration.