For some, coronavirus recovery is fraught with long-term complications. They are known as “long-haulers” because of their constellation of lingering symptoms with no discernible pattern. Preliminary data suggests recovery typically takes about two weeks for mild Covid-19 cases and three to six weeks for severe or critical cases.
For long-haulers, however, a negative coronavirus test doesn’t signal the start of normal life, but instead marks the beginning of an uncharted road to recovery that can feel endless. Long-haulers surveyed in a coronavirus survivor Facebook group identified 100 different symptoms, including fatigue, pain, difficulty sleeping, heart palpitations, neuropathy, tinnitus, tremors, blurry vision and memory problems. A recent study in the journal Brain found an association between coronavirus and neurological and neuropsychiatric illness. A study in the journal Cureus documented 18 neurological abnormalities that can affect Covid-19 survivors, including headache, stroke, seizures, Guillain-Barre syndrome and muscular paresis.
Here are the stories of three people who are coping with health issues in the wake of coronavirus.
‘This is not normal’
Karyn Bischof, 30, former firefighter and paramedic, Boca Raton, Florida
My symptoms started around 15 March. When I was tested for coronavirus on 23 March, I’d had a sore throat, a fever, dry cough, shortness of breath and I’d lost my sense of smell. I felt like a freight train hit me. I honestly felt like I was going to lose consciousness. I’m a single mom and since schools were closed and I still had to work, I’d dropped my 11-year-old son off to stay with my dad, who lives two hours away. I was already anxious about being sick but being completely alone added to my anxiety.
The second and third weeks after my diagnosis I mostly stayed in bed. Week four and five I returned to work and that’s when it hit me: this is not normal. I was experiencing what long-haulers call waves; your symptoms come and go and you never know what they’re going to be.
I feel helpless. Before, I went to Orange Theory [fitness studio] five or six days a week. Now a flight of stairs exhausts me. I can’t play soccer, ride bikes or go to the pool with my son. I feel so much mom guilt, like I’m an absent mom. I’m unemployed and I don’t know what kind of work I’ll be able to tolerate in the future.
I have intense fatigue, insomnia and headaches daily. My vision is cloudy and my eyes feel heavy. I have brain fog and nerve pain which feels like burning or electrical shocks. I have dizzy spells, vertigo and hot flashes. My sense of smell has returned but sometimes it’s altered. Cleaning solutions smell 20 times stronger. I’m concerned that I have post-viral dysautonomia [a disorder of the autonomic nervous system, which controls essential bodily functions like blood pressure, heartbeat and metabolism], which is something that can happen to coronavirus survivors.
On top of all my symptoms, I feel like my healthcare providers aren’t taking me seriously. I’ve had to fight to get in-person appointments. When I did go to my pulmonologist’s office, he waved his hand at me and said: “You’ll be fine.” Before I read an article in the Atlantic about long-haulers I thought I was going crazy because I didn’t know anyone else was having these long-term symptoms. Since I read that article I joined Facebook groups for survivors. Knowing that other people are experiencing these bizarre, crazy symptoms has been huge for me.
‘The amount of pain is shocking’
Bilal Qizilbash, 34, CEO, Jackson, Mississippi
When I tested positive for coronavirus in early May, the emergency room doctor sent me home. But when my lips turned blue, I went back to the emergency room and I was admitted to the hospital. I stayed there for over a month, mostly in the ICU. I wasn’t on a ventilator but I wore a snorkel-like mask. It connected to a machine that blew air into my nose and felt like a hurricane.
Since I was discharged in June, blood clots have sent me to the emergency room at least six times. I’ve stayed in the hospital, for observation, a total of around 10 nights.
Sometimes I have to take a break from work to lie down in the fetal position … I’d say I’m only functioning at about 40%
Because of fluid in my lungs, I have lung pain and coughing that interfere with my sleep. I’m clearing my throat constantly. The last time I went to the emergency room it was because I’d had chest pain for three or four days and it was severe to the point where I couldn’t sleep at night. Then all of a sudden, it shifted to my legs, and there was this massive amount of swelling. I’m 34 years old, I’ve never had edema, and I’m fairly active. I was like: “What the hell?”
I clear my throat constantly and my sense of smell is now hypersensitive. The amount of pain I’ve experienced is shocking. It almost feels like a bioweapon. Sometimes I have to take a break from work to lie down in the fetal position. The pain is so distracting I make mistakes in my job and rely on my team to check my work. I’d say I’m only functioning at about 40%.
‘On top of the physical symptoms, it’s mentally hard’
LaToya Henry, 43, public relations and communications specialist, Lathrup Village, Michigan
I started with a low-grade fever and a cough. I had no appetite, and I couldn’t keep anything down. When I saw blood in my stool I went to the ER.
A week after I started to experience symptoms I was at home with my parents, who I live with, and I felt really weak so I yelled for them to call 911. I went to the hospital in an ambulance. Two days later they put me on a ventilator. They took me off it after a week and I was discharged on 11 April.
By then I’d lost a lot of muscle. I went home with a walker and extreme fatigue. Then I started noticing this buzzing sensation in my body, mostly in my lungs. The best way I can explain it is it feels like my body is trying to make energy but it can’t. At first, it happened a few times a day. Now it’s about once a week.
My mucus was all kinds of colors. My doctor said to expect that, but I was still really surprised when it was the color of soot. I have never seen mucus that color. I called my doctor when it was black and he said not to worry. It was very disconcerting. I also had a severe eczema flare for the first time in at least eight years, which my doctor said was part of the healing process. I still have unexplained twitching in my arms and legs. I also have what I call “rona-insomnia”. I usually sleep from 11pm to 2am, I’m awake from 2 to 5am, and then I sleep until 8am.
I had no pre-existing conditions and months later I’m still not totally back to normal. My balance feels off and I have intermittent chest congestion. I’ve also been diagnosed with an irregular heartbeat.
On top of the physical symptoms, it’s mentally hard, too. I was so afraid I’d have to go back to the hospital. And the doctors tell you to expect you’ll have good days and bad days, but you really don’t know what’s normal. I feel like I email my doctors with so many questions, they’re probably sick of me by now.
I want to tell people to please wear your masks.
Interviews were edited for brevity and clarity.