With Long COVID, I Both Hope and Hide

I choose to do one more than the other.

It’s been several weeks since I’ve posted, because I’ve spent the past weeks planning ways to best serve you going forward. I believe that kind of effort is necessary with the recent and rapid growth of Long Covid, MD. Although I’ve certainly had moments of overwhelm, I’ve asked for and received help from kind experts who want to see us succeed. Rest assured some amazing interviews, collaborations, and information are on the way.

Since the last post, I’ve also had a number of medical appointments, some of which required long travel. I even got to have some fun! Remember fun?!

I’ll share details in the upcoming October Rundown. I’ll also explain how I’ve been able to push myself recently without crashing (too severely). Not surprisingly, the key is being very judicious with how I spend my time. On that note, I’ll admit another reason I haven’t published Long Covid, MD recently: I simply did not have enough energy to do all that pushing, and also share a thoughtful post.

I also admit that some days I felt terrible, and I simply don’t like sharing that. My instinct is to hide when I’m unwell, and I’ve spent time the past weeks thinking about that instinct. Yes, I hide because I need rest, but do I also hide because I want to share only my ‘best’ self? If so, what does ‘best’ really mean? Does this judgmental view of my body benefit me? Is this behavior I want to model?

While the answers settle, I intend to find ways to share with you regularly, as you have shared with me. The messages you’ve emailed, have DM’d, and have texted me, are incredibly meaningful. I heard mental health therapist and podcast host Dr Joy Harden Bradford recently say that grief wants to be deposited in a safe place. Your messages tell me I am a safe place for you, and that makes me feel humbled and, frankly, emotional.

You know as well as I do that it’s not all grief, however. We also share wins, and I’ll share some of mine. Since I last wrote, I have met scientists from Johns Hopkins to UCSF who specialize in Long COVID. I’ve met primary care physicians who work with communities in need, and who want to improve the medical system’s approach to complex disease. I met advocates from government agencies and grassroots collaboratives centered on Long COVID. And maybe best of all, I’ve met individuals who are helping Long COVID efforts from their living rooms and bedrooms. These groups are simultaneously researching answers for the future and filling immediate needs.

By and large, all of these people are hopeful about Long COVID research and treatment. So I choose to be hopeful, too. And while my health is not fully recovered, I’m committed to living a meaningful and fulfilling life as answers come.

Long COVID affects upwards of 600 million people worldwide. But it’s hard to understand that when we’re suffering alone. Please know that if you have Long COVID, are concerned you have Long COVID, or have a loved one with the diagnosis, you are not actually alone. We are isolated in many ways, yet millions of us are experiencing this together.

Meeting so many people the past few weeks has taught me that, while I might feel weak at any given time, we are powerful as a group at all times. We might be members of a club we did not choose to enter, but when I look around, I see that I’m in pretty amazing company. We’re not having too much fun together, it’s true, but together we are going to find a way through Long COVID.

I’ll leave you with this short video of linguist Sunn m’Cheaux. When speaking to an audience in French-speaking Guadeloupe, he uses the metaphor of baking to illustrate the collective power of the African diaspora, a heterogenous group that has been marginalized and in many ways disempowered. His words reflect the way I feel about this Long COVID community, too.

There’s a lot coming, so no more hiding. We’ll talk again soon…Zeest