Yesterday, The Atlantic published Ed Yong’s article “Long-Haulers are Redefining COVID-19.”  Yesterday also marked five months from the onset of my COVID-19 symptoms. I am one of the so-called “long-haulers,” “people who have been suffering for months—alone, unheard, and pummeled by unrelenting and unpredictable symptoms.”

I do believe that I am on an upward, healing trajectory, and I am grateful for that. But I’m also angry and disheartened and disillusioned about the ongoing response to this virus, the “catastrophic governmental choices that allowed the coronavirus to spread unchecked,” and how, “[t]hroughout the pandemic, systemic failures have been portrayed as personal ones.” I am frustrated and frightened by how little, still, is known about this illness, especially regarding its chronic manifestations. Doctors have shifted from the optimistic (yup, your smell will return in two weeks; you will fully recover in a month; your labs look ok so you are ok) to the cautious (we honestly don’t know the prognosis; we hope you will recover; we want to learn together).

I am glad to be able to assist researchers–in some small way–in learning more about this illness, and I am hopeful that all of this will also shed some light on my own unique manifestation of this illness and help me to heal more fully. I had my appointment at the Mount Sinai Center for Post-COVID Care (referenced in this article) this morning, where I also agreed to participate in yet another research study. I finally have some concrete lifelines to follow up on my chronic COVID issues, and was given referrals to a number of other specialists: cardiologist, rehabilitation/physical therapist, ophthalmologist, ENT, gastroenterologist, rheumatologist, functional medicine doctor, on top of the primary care doctor, infectious disease specialist, allergist/immunologist, neurologist, ENT and gastroenterologist I already see. And yet, all of this takes my time, money, advocacy, strength and persistence and energy that is already in such short supply these days. “A lot of people who don’t have the energy to educate the world are educating the world.”

Most people can’t imagine that I am still struggling with this illness after so long, after having what is considered to be a “mild” case. So they send me virtual messages about how glad they are that I am feeling better (because they assume that, after all this time, I must be feeling better). Colleagues and friends and, yes, even doctors exclaim: but you look great, you’re so tan, your hair looks awesome, you’re in such good spirits, you’re so resilient! Even those who I talk to and see regularly–my close friends and family–have a hard time grasping the enormity of the illness, because much of its effects are not visible to others, are intermittent, are below-the-surface. You may catch me on a good day, or a good week, when I am laughing or sitting in the sun or enjoying a beer; when I am in relatively good spirits. You may catch me on a day when I am able to sit through a work meeting or do a Zoom friend catch-up session, go on a walk (or even a hike) with you. You may connect with me when I’m on an upswing, with energy and enthusiasm and hope and productivity. You may see my smile that I put out to the world. But most of you won’t see me on the days I can’t get out of bed, the moments when sitting up on a bench and just breathing feels like too much exertion; the times my arms and legs feel heavy, like lead is coursing through my veins. Most of you won’t see me, months out, doing my smell training twice daily, frustrated with my fluctuating (and sometimes almost non-existent) smell and taste. You won’t witness the headaches and the sore throats and earaches and pink eye and dizziness and chest pain and body aches and bone pain and peripheral neuropathy and gastrointestinal issues and sleep problems and migrating inflammation. Most of you won’t witness my brain fog, when I completely forget what I am talking about or what I am doing, when words and thoughts fly from my head, when I can’t concentrate or think straight or remember, when I accidentally pick up the dish soap instead of olive oil when I am cooking. I may tell you, in moments of vulnerability, about how utterly depleted I feel, but you likely won’t see me in the moments when I feel most tired and powerless and hopeless and lonely and afraid. And even if you do see me, you won’t be able to really get what it means to live like this, on a daily basis.

I’m not saying all this to make anyone feel bad or ignorant (and please keep sending your messages … they are so much appreciated!). I honestly would not believe these things myself if they were not my own, chronic, embodied experiences. I’m saying these things so that people understand that the long-haul is real, that you never know how your body will respond to an illness, that in the blink of an eye your health and life and long-term prospects can change. Please believe that, with COVID-19, “recovery is tentative, variable, and not guaranteed.” Please be as conscientious as you can in keeping yourself and others safe and healthy. And please, offer support and love and kindness and empathy and compassion (or, at the very least, the benefit of the doubt) to those who are not as fortunate to be so. We are still struggling for much longer than you think we are or should be, and in ways that are hard to articulate and understand. We are in this for the long-haul.