“Just because you can’t see symptoms…”: A story from a Long COVID Clinic

COVID-19, , , ,

Leer en español

As the Primary Care Medical Director for the University of Washington Long COVID Clinic, Dr. Nikki Gentile supports patients and also studies the effects of long COVID, focusing on pain. In this comic strip, she shares some of the challenges facing patients and offers suggestions to help patients manage symptoms.

Young adult patient talks with Dr. Nikki Gentile. Both wear masks. Narration: After some people have COVID, they get symptoms that persist for more than 3 months—and even up to several years. We call this long COVID. The patient asks, “ I’m so tired. I can’t even walk a block anymore.” Dr. Nikki replies, “Your COVID illness likely triggered the fatigue. Looking at all the test results, we’re not seeing another obvious explanation.”
The patient looks worried She says, “But I didn’t feel this tired when I had COVID.” Dr. Nikki replies, “ Long COVID symptoms often aren’t the same ones you had when you were initially sick with COVID-19.”
A close-up of Dr. Nikki Gentile of UW Long COVID Clinic. She has light brown hair and wears a doctor’s coat and scrubs. She says, “I treat patients who have long COVID, and I also study how it impacts their quality of life. Of the thousands of patients we’ve seen, over 80% say that they can’t work in the same capacity as before they had COVID.”
Research has identified over 200 possible symptoms. Some people may have one or two, others may have multiple. A woman hold her hand to her chest as she leans on a kitchen counter. She says, “My heart rate goes way up just walking to the kitchen.” A teenager has a laptop open and leans his head on his hand. He says, “Headaches and brain fog make it hard to focus.” A middle-aged man holds an inhaler. He says, “I have asthma for the first time. And I feel intense anxiety for no reason.” A young man has a hand over his mouth and he looks distressed as he leans over. He says, “Excuse me, I can feel the nausea starting!”
A patient sits on a exam table, wearing a mask. He talks to Dr. Nikki. “ My diabetes was well under control until I got COVID. So now I need to take insulin?” Dr. Nikki replies, “ Yes. Unfortunately, if you have an existing medical condition, COVID-19 illness can make it worse.”
The medical field hasn’t yet come to agreement on a diagnostic tool that includes specific symptoms for long COVID. A doctor in a white coat and blue scrubs types into a computer while a patient wearing a mask sits behind him. The doctor says, “ I’m not sure if the symptoms are long COVID or not, so I’m not going to make that diagnosis.”
Dr. Nikki explains, “ People can be harmed by not having a diagnosis.” A worker sits facing a human resource representative. The worker says, “I’m in so much pain, I can barely walk. How can I work?” The human resources representative looks worried and says, “Sorry, but without a diagnosis from your doctor, you don’t qualify for disability.”
Dr. Nikki explains, “ It can feel like medical gaslighting when providers don’t acknowledge patients’ symptoms. I developed long COVID myself, so now I understand. Just because you can't see the symptoms doesn’t mean the symptoms aren’t there.” The worker is now at a clinic, wearing a mask and hospital gown. He holds up his arm and says, “Sometimes I get a buzzing sensation, and other tines it feel swollen.” The doctor says, “I don’t see any swelling. It’s probably just in your head. I wouldn’t worry about it.”
Dr. Nikki explains, “But when people can get support, it can help them get better. We’re able to help them manage their conditions so that they can get through daily life.” Some things that may help, shown in illustration: physical therapy, acupuncture, and a post-it note showing how someone is pacing out their schedule. Also included: work accommodations. The human resource representative says, “We can work out a flexible schedule so you can take breaks.”
Right now, there aren’t enough long COVID specialty clinics for the huge number of people who need support. But more providers are learning about long COVID. Research, including clinical trials, is happening that will hopefully find other treatments and therapies that will help. Dr. Nikki Gentile, MD, PhD, speaks at the 2024 UW Long-COVID symposium. She says into a microphone, “To patients, I say this: Don’t give up hope.”

Long COVID Resources

If you think you might have long COVID:

Information about long COVID:

Preventing long COVID

Anything you can do to reduce the risk of getting COVID in the first place and decrease the risk of severe disease will also reduce the risk of long COVID. So that means:

  • Keeping up with COVID-19 vaccinations.
  • Using all the protective measures, especially in crowded situations, like wearing well-fitting masks and making sure there is good air flow in rooms.
  • Even if you had previous infection and never got long COVID, it is important to take precautions because long COVID can still occur during re-infection.
  • Testing early and if you are eligible, getting treatment if you get infected with COVID-19.

Other long COVID stories 

This comics series features King County residents and providers sharing their experiences with the long-lasting symptoms and conditions that can follow an infection with COVID-19. Thank you to Nikki Gentile for sharing this story. Other stories in the series:

Coming to Terms with Long COVID: Deepa’s Story – PUBLIC HEALTH INSIDER

They Don’t See the Crash: Jesse’s Long COVID Story – PUBLIC HEALTH INSIDER

Comic by Meredith Li-Vollmer. Originally posted on July 17, 2024. 

Posted by

I am a risk communications specialist at Public Health - Seattle & King County.