I Got COVID-19 in March 2020 And I’m Still Sick

Today is Day 149 since my first covid symptoms and still down and out with a serious chronic illness. Here with an update on my health as the pandemic and its breakdowns continue.

Overall there’s relative improvement with time. The working assumption is that rest will bring recovery, and that treating each symptom/system is the best healthcare strategy. Relocated to my parent’s house in Chicago from Brooklyn after five months figuring this out on my own. On a leave of absence from work. Leaning on a strong community of peers also dealing with Long Covid.

Search “covid long haulers” and all our stories read variations on the damn same. Days 1–11 were flu-like 5x, mild enough to keep me out of spring 2020 NYC hospitals. April to June were random symptoms and trashed lungs until a save from an ICU pulmonologist at Mount Sinai.

Today, these are my main symptoms:

• NEUROCOGNITIVE FUNCTIONING. My brain doesn’t work like before. I can’t process complex issues beyond a few minutes. It hurts to read or write beyond snippets. Forget words and spelling. Clumsy. My working memory is not great.
• HEADACHES. Always a headache with little relief. Migraines. Pressure like my skull will burst out. Dark quiet rooms listening to records help.
• FEVERS. Pretty consistent low fevers that spike every day or two. Currently fever-free since Day 139 — longest stretch since I got sick.
• FATIGUE: I’m always tired with restless exhaustion. Limbs unmovable like iron. Like awake sleep paralysis some times. Physical, mental, and emotional exertion relapse symptoms. The crash recovery time is getting shorter (except when longer) as I learn to manage this.
• NEUROPATHY. My feet are cold and sore to touch let alone walk. Like just after a rock scramble in your recovery shoes but forever. I lay down a lot.
• HAIR LOSS. My hair significantly thinned and changed textures — the body’s common response to trauma.
• OTHERS. Those are my main symptoms except when they’re not. Tinnitus. Blurry vision. GI. Muscle pain and weakness. Joint pain.

My case is dubbed mild. Not counted on any official covid list. No hospital stays. If I died — and I often thought I wouldn’t wake up — it wouldn’t be counted as covid. One CDC study finds 1/3 of coronavirus patients not sick enough to be admitted to the hospital don’t fully recover. We don’t have data on these people. No one knows the lasting effects of SARS-CoV-2. Not length of illness nor laundry list of permanent damage we see evidence of. Data on long covid numbers are scarce and incomplete. We know from CDC that one in five aged 18–34 with no chronic medical conditions has experienced persistent covid symptoms after testing positive 2–3 weeks prior. Google the rest.

My medical care is not ideal but I’m cobbling it together. Big picture plan: treat the symptoms/systems. My main sources of care are my own research, my doctor parents/friends, online support groups/resources, and sporadic healthcare professionals. The best care is under academically-oriented physicians who are hungry to solve the new plague and publish papers. We theorize together during our sessions. So far I’m 50:50 for doctors that believe me AND will treat me. Doctor after doctor comes back with negative and normal tests (thank God). Some of my doctors hesitantly call what I’m experiencing a variation on ‘presumed post-acute covid post-viral syndrome’ but no official diagnoses on paper. “Hesitantly” because no one knows what this is nor what to do. “Presumed” because I’ve had no positive covid or covid antibody tests. Still ruling out the Other Things. A few more specialists to see, otherwise waiting for research to catch up.

And. I’m in good spirits. I’ll probably get better. People can get better after post-viral syndromes. Maybe not. Either way I got lucky in health and support nets. Grateful for the privileges of good health insurance, good healthcare access, a supportive employer, and money.

I hope you and your loved ones get lucky, too. Many more won’t. You have neighbors and friends and family and networks of low-wage workers that serve your comforts. I don’t know how to explain that you should care about those other people.

Also, avoid getting covid so you don’t have to negotiate the nightmare of contracting a nine-month-old disease while navigating broken civic and medical infrastructures. In my experience as an American, Ed Yong at The Atlantic reports it best, like in How The Pandemic Defeated America and Long-Haulers Are Redefining COVID-19.

Please keep taking the coronavirus pandemic seriously. State and federal policies aren’t adequate to contain this until we see better federal leadership and societal norms in place. Maybe it’s my New-Yorker-during-March/April trauma or maybe it’s just good pandemic protocol, but follow the damn guidelines as best as scientists understand them today, and best as your situation allows.

My hope is by knowing someone sick with long covid, you can help change public policy and society’s behavior and attitudes to better support human life. Grassroots networks of patients and allies are advocating for research and amplifying our stories. We don’t know what else to do other than to scare you with infinite stories of previously healthy thirty-somethings facing permanent chronic illness.

Note: Updated since original post.