Crystal Williams is one of many patients who had persistent and uncomfortable symptoms after her COVID-19 diagnosis, known as long COVID.* Her dizziness and shortness of breath led her to visit the emergency room eight times. She received fluids and oxygen each time, but she never got answers to why the symptoms were still present.

Even after shortness of breath eventually improved, she began to experience chest pain, headaches, dizziness, exhaustion, and brain fog. She eventually stumbled upon a Facebook group for people with long Covid that suggested specialists, such as cardiologists and a sleep doctor, who had the potential to finally help her. 

After booking appointments and undergoing tests, she was finally able to begin her healing journey, more than seven months after her symptoms had begun.

Several patients have recounted stories in which they felt dismissed after sharing they’ve been dealing with a range of symptoms with the medical community.

Common Symptoms

Symptoms that occur in long COVID patients may include:

• Fatigue
• Shortness of Breath
• Headaches
• Digestive Issues
• Ongoing Fevers
• Exhaustion
• Lack of Taste or Smell
• Racing Heart Rate

These symptoms are said to occur for a minimum of 12 weeks in 1 of 10 people with a COVID-19 diagnosis. Additionally, the Cleveland Clinic, which established a long COVID center, has found that these symptoms are common in people with mild cases, not only hospitalized persons.

Limitations to Accessing Quality care

In fact, many clinics, such as the Cleveland Clinic’s center, are being established across the country specifically for people with long COVID symptoms. These clinics may have a neurologist, physical therapist, and neurologist on board, among specialists, for comprehensive treatment plans. However, these clinics are often few and far between and have extensive waitlists.

Additionally, most physicians, especially those outside of long COVID clinics, have been unaware of how to treat these symptoms due to a lack of ample research on long COVID to guide them in their treatment plan, and so have been treating each symptom in an isolated manner versus a more holistic approach.

A Change for the Better

As scientists continue to explore the effects of COVID-19 on a long-term basis, more therapies will emerge, allowing physicians in or out of these long COVID clinics to effectively treat their patients. For example, the National Institutes of Health has been granted $1.15 billion by Congress to study the long-term effects of COVID-19.

While research ramps up, it’s important for clinicians to incorporate patient stories into their care. “It really still comes down to doctors being willing to listen to patients and caregivers, as they are experts in living with their condition,” said Jennifer Elliott, mother of long COVID patient, Lizzie Elliott.

Elliott, a 19-year-old student at Ursinus College in Pennsylvania, explained that she felt exhausted and had a racing heartbeat after simple activities like walking. She was able to find a skilled physical therapist (PT) who listened to her story and prescribed activities with follow-up interactions on how she feels after engaging in them so the PT could make adjustments, if needed.

In addition to finding a physician who truly listens and hears you, Williams explains that it’s important to be your own health advocate and share your symptoms and whether or not you’re satisfied with the treatment plan. Leaning on a support group and knowing you’re not alone can also help the healing process and your emotional well-being.

Williams also hopes that by having a glimpse of a day in the life of someone with long COVID, others may take preventive measures from catching the virus in the first place.

Much about the novel coronavirus, i.e., COVID-19, is still not fully understood. As research progresses and our knowledge of the virus increases, information can change rapidly. We strive to update all of our articles as quickly as possible, but there may occasionally be some lag between scientific developments and our revisions.

*STAT. (2021, April 21). Long Covid patients struggle to get care for their symptoms. https://www.statnews.com/2021/04/21/long-covid-patients-struggle-to-get-care-for-their-symptoms/