My first Covid-19 symptoms appeared on March 14: a low-grade fever, profound leg pain, malaise, and loss of appetite. More than 100 days later, Covid-19 is still with me. Some days I wonder if it will ever leave.
In the early days, as my symptoms fluctuated, I was determined not to go to the emergency department or urgent care because it seemed like there were too many people who needed the help more than I did. Maybe I was especially sensitive to overcrowding in emergency departments because I’m a physician. But it turns out that this strategy was a common one.
In New York City, where I live and work, there were more than 5,000 excess deaths not directly linked to Covid-19 between March 11 and May 2, likely because people were delaying care or not going to emergency departments or urgent care due to fear of contracting Covid-19 or oversaturating the medical system.
I did eventually go to the emergency department one day when the abdominal pain and nausea were severe. Routine testing showed that the level of liver enzymes in my blood was higher than it should have been, but not much more, and I was sent home.
Once day 14 had passed, my fear of an impending respiratory collapse turned into an uncertainty about the trajectory of my disease and a desperation for answers. I contacted my doctors regularly, hoping their responses would bring relief in the form of some intervention. Yet most of their efforts did little to significantly change the course of my symptoms.
As a relatively inexperienced physician, the bulk of medicine I have practiced has been focused more on the known than the unknown. As a psychiatry resident, I have become somewhat more accustomed to diagnostic uncertainty and clinically guided trial and error. Yet as my Covid-19 symptoms dragged on, my physician identity began blending into my patient identity. As I repeatedly encountered the term supportive care, I realized that this wait-and-see approach hardly seemed like care at all.
Doubt started creeping in. Mild and moderate cases resolve within two weeks, I kept telling myself over and over, while my body was telling me a different story. Soon, though, articles about the potential for prolonged symptoms trickled in, easing the isolation I felt from being an outlier and giving me some hope. At the same time, the guilt of being unable to assist my colleagues in a time of crisis lurked in the background.
My search for answers eventually led me to an online support group that included people like me with prolonged Covid-19 symptoms. In addition to validating my experience, I felt a strong sense of belonging to a larger community as I read through reports of others going through the same thing I was, sometimes even with the same emotional response.
Some in the group had prolonged low-grade fevers that didn’t respond to standard fever-reducing medications. Some experienced terrifying neurological manifestations such as memory loss and changes in their ability to recall words in a primary or secondary language. Others were battling exercise-induced fatigue, with attempts at walking around the block sparking a relapse of symptoms. I’ve seen people citing symptoms in the central and peripheral nervous systems, the gastrointestinal tract, the skin, cardiovascular system, and more.
The multitude of organ systems that were affected, along with the waxing-and-waning nature and unpredictable trajectory of symptoms, were particularly eye-opening.
I learned that there were many people with symptoms more severe than mine, some of whom were isolated both physically and emotionally, left to fend for themselves, without the robust support system I am lucky to have.
I also discovered a patient-led research project attempting to characterize post-Covid-19 syndrome. As I become involved in this project as a patient and clinician, I hope to emphasize the patient perspective, ensuring that this population is heard by the medical community and highlighting the toll this disease has taken on patients’ abilities to successfully live their daily lives.
Recent deaths by suicide of medical providers who tested positive for Covid-19, though unconfirmed to be related to the illness or its consequences, underscore the tremendous need for support during this time, in which many of us are plagued by uncertainty. People like me with prolonged Covid-19 symptoms have described the doubt they have faced, at times feeling gaslighted by family members and employers attributing their ongoing symptoms to post-viral chronic fatigue syndrome or anxiety, and questioning their inability to return to work after two weeks of illness. Even if it turns out to be true that there is a psychological component to prolonged recovery, comments like “your symptoms are all psychological” or “there is nothing wrong with you medically” do little more than create distance and potentiate resentment.
I’ve now logged nearly four months of symptoms, with little sign of returning completely to my pre-Covid self. As a physician, I was aware of the concept of post-viral syndromes; as a patient, this concept brings a dismal new meaning, signaling the possibility of a new disease and everything is unknown — especially how long the symptoms will last, and which of them might be permanent.
I am lucky not to have the debilitating fatigue, shortness of breath, and fevers others have been experiencing. At this point I’m still experiencing intermittent gastrointestinal symptoms, persistently high liver enzymes, which a liver specialist is trying to figure out, and an odd and continuous discomfort in my leg, which may be paresthesia. I’m able to go to work and go about my life just fine. Many others can’t do that.
I write with the hope that even one more patient who has been struggling with prolonged Covid-19 symptoms may not feel so alone. I write with the hope that one more physician, friend, family member, or supervisor may see this article and realize the importance of support since there’s currently a lack of treatment options.
So far in the pandemic, clinicians have focused nearly exclusively on managing respiratory symptoms and preventing the spread of SARS-CoV-2, the virus that causes Covid-19. As we enter the next phase, increasing evidence points to a significant proportion of us with prolonged symptoms, and this warrants attention.
Yochai Re’em is a physician and third-year psychiatry resident at NewYork-Presbyterian Hospital, Weill Cornell Medicine.
From the “Believe It or Not“ department…
I suffered a heart attack on May 2, then was diagnosed with coronavirus on May 21. A double whammy. I too have been struggling with lingering effects, mostly due to the virus.
My heart attack was a STEMI, “the widow maker“, which was caught in the nick of time, because I was suspicious of my early mild symptoms. And the subsequent virus lasted eight days – a painful, frightening and lonely experience.
As weeks have gone by, I have continued to experience fatigue, no sense of taste or smell, a dry patch in the back of my throat that traps food, sharp pains in my esophagus, a persistent dry cough, muscle aches, and insomnia.
I am a 69-year-old former RN who was used to hiking several miles through hill and dale with a senior hiking group. One hike, recently adapted for me, was less than a mile in length, yet I canceled at the last moment. Fear, knowing that I couldn’t walk more than a couple hundred feet without shortness of breath, and still uncertain about the condition of my heart (cardiac rehab in our area has been closed, so I have had no reconditioning or counseling) led to my decision.
It’s so hard to know what to say when someone asks “How are you doing?“ At the risk of sounding like a hypochondriac, I quickly sift through my symptoms and choose some that don’t sound quite so bad. It’s simply not like me to complain. But truly, sometimes I feel my life and my health are never going to be the same.
Actually, the heart attack was a walk in the park compared to the virus. For two weeks, I felt like a new person. Then I was cut off at the knees. When my husband and I take our evening walks, it’s hard for me to walk and talk. And I’m a talker. I don’t want to have to change who I am, but I think it’s going to be a while before I go back to who I used to be. I had an episode of anxiety several days ago. I am not an anxious person, and have never taken medication for anxiety. My chest was so tight, I finally had my husband take me back to the hospital (where I may have contracted the virus in the first place). HIS anxiety was through the roof at having to once again just drop me off. The ER staff spent the night ruling out all things coronary. Yep, it was anxiety. Anxiety that the shortness of breath, back pains, dry throat and lingering cough may never go away. I have tried Tai Chi, Qi Gong, deep breathing, tapping and meditation, which are wonderfully calming, but my medical mind wants to know why and how I still have these symptoms. Rosa, please do not reduce the author’s illness to a sniffle. I dare say most of the brave people who have shared their story are not used to divulging their health issues. There’s the risk of being labeled a malingerer. This virus is real. We all want to go back to our normal selves. I suggest we rely on our faith and turn to our Maker or to the Universe. As we realize this is a personal challenge for each of us, we can hope that the old adages are true – this too shall pass, and that which does not kill us makes us stronger.
God bless all of you, and thank you, Doctor.
GG
What you are describing is Exactly the experience chronic fatigue suffers went thro. Since HIV was the hot topic when “Yuppie Flu” was first characterized, researchers were sure it was a retrovirus. CDC now calls it Myalgic Encephalitis and apologized to sufferers. BTW one feature of ME is a cytokine storm. Sound familiar? Another feature is remitting and relapsing symptoms. Classic onset is a flu from which you never recover.
Thank you for posting this. I had a virus in early March. I am still recovering. I had extreme fatigue, numbness in my legs, and blood clots in my legs and lungs. I am considered high risk (over 70) but the lack of information available is frustrating. Knowledge is power.
Same,,my hang on is this dam tiredness,,daily,,a walk to the car beats me up to where i feel im gonna pass out.
This is why we MUST have a vaccine for this disease, and we must have it QUICKLY. This is a horrible and clever disease. It can spread easily. The website: http://WWW.1DAYSOONER.ORG has the fast way to approve vaccines. Vaccines have saved millions of people in the past, and vaccines can save us from Covid 19.
ARE PEOPLE with Lupus are they being diagnosed with covid19
Sounds like it! No one, including the author can confirm they had actual tests for SARS-CoV2 before and then after symptoms.
Yes
10-07-2020 | Rheumatology | News | Article
News in brief
RA, SLE associated with COVID-19 mortality risk in large UK study”Among the 878,475 people with a diagnosis of RA, SLE, or psoriasis, COVID-19-related death occurred in 0.11%. People with these conditions had a significant 19% higher risk for COVID-19 mortality that those without after adjustment for factors including age, sex, BMI, and comorbidities.”
https://www.medwirenews.com/rheumatology/infectious-disease/ra-sle-associated-covid-19-mortality-risk-large-uk-study/18168202
I’m really sorry for you and I feel a great compassion. To tell you the truth, I got a severe pneumonia which nailed me in my bed on March 3rd and I was so badly cared for by a hospital and by the doctors that it caused severe heart and kidney problems: I am still trying to get out of that and, every step of your story, I could feel it in my flesh… the never ending symptoms, the despair of getting back to what it was before, the loss of energy, the physical pain, the lack of understanding from other people. It is terrible, it is impossible to describe. I have now taken a step to try (I insist on “try”) to believe that it is a trial God wants in order for me to prove how faithful I can be: this is the only way I can explain and I can stand the situation. I wish you much courage and strongly hope you will really and fully recover very soon. All my best wishes. Be blessed.
My symptoms lasted 3 days Medicinal leeches to my chest and in 10 minutes I could breath and 12 hours it was as if I never had breathing issues that prevented me from breathing. 760 805-0500 Retired Surgical Nurse who is immunocompromised
thank you Dr. your honesty and bravery offer hope to the suffering….
Do you think someone who has mild lingering symptoms can still be contagious after 40 days? Thank you.
Thank you for sharing your experience. I hope that with the passing of time we understand more about this virus and how we can help those that are suffering.
just like the girl with the never ending hiccups. your bound to live the rest of your life with a cold. . . could be worse. I watched a family member succumb to cancer after a devastating 2 year fight. no one cares about your stuffy nose.
Rosa, shame on you for belittling someone else’s experience. God forbid it ever happened to you, you would want understanding and hope, too. You have no idea what they are going through, but you judge it like you’ve been through it a hundred times before. I hope you find peace and compassion soon, as you seem to be missing both.
Wow, Rosa. I am stunned by your lack of insight and compassion. Remember \to share your comment with any doctor you see in the future to assist them in treating you. I suspect you are a Russian troll, so I don’t expect you to answer.