Gregory Hooke, Intern, Johns Hopkins Bloomberg School of Public Health

Throughout history, women with chronic conditions have battled accusations of being hysterical, emotional, or even pretending to be in pain. Unfortunately, for women experiencing long COVID, this narrative has not changed. Many of them have expressed that their long COVID symptoms are disregarded by their healthcare providers, leading to frustration and disappointment with the care they are receiving.

Healthcare providers themselves are also frustrated. Long COVID is not well-understood, making it difficult to diagnose. The symptoms of this condition tend to be too general to identify in a short doctor’s visit. Even after extensive imaging and multiple laboratory tests, healthcare providers cannot always confirm the symptoms are caused by long COVID. 

The pandemic after the pandemic

Long COVID can be described as a multisystemic condition following COVID-19 that worsens an individual’s health and quality of life. Long COVID has a wide variety of names, including post-acute COVID-19, long-haul COVID, and late sequelae. Adverse outcomes of this condition range from fatigue, headaches, and brain fog to multi-organ damage, strokes, and heart failure. Over 65 million individuals worldwide have long COVID, and that number is increasing daily.

Unlike a broken arm, which is quickly identified through X-rays, long COVID is very challenging to detect medically. Patients with long COVID often receive normal results from traditional diagnostic tests such as CT scans, MRI scans, and echocardiograms.

In an interview that I conducted with Dr. Alba Azola, a rehabilitation physician on the Johns Hopkins Post-Acute COVID-19 team, she explained why these tests often fail to detect long COVID. “These tests are designed to identify findings correlated with diseases we understand. For example, a patient with long COVID may experience chest pain, but the typical cardiac tests fail to reveal any issues. However, what those standard tests fail to detect are other underlying issues such as nerve damage from long COVID”. Limitations such as this offer insight into why many test results come back normal for long COVID patients despite their ongoing symptoms.

Healthcare providers may also check for COVID antibodies produced by the immune system in response to COVID-19. However, it has been discovered that more than 50% of long COVID patients do not have these antibodies. Consequently, when these diagnostic tests return with normal results, individuals struggling with long COVID feel that their experiences are not validated, leading them to feel embarrassed and as though they are losing touch with reality.

The challenges faced by women with long COVID

Females under 50 are five times more likely to develop long COVID symptoms than males in the same age bracket. The disproportionate rate at which women contract long COVID has resulted in a disproportionate amount of skepticism from healthcare providers when reviewing their symptoms. Dr. Azola explains that due to gender norms, “women tend to be perceived as hyper-aware of their symptoms, labeled as anxious, premenopausal, or perimenopausal”. Additionally, there is reason to suspect that females from minority races are experiencing this type of prejudice from their healthcare providers with higher frequency. 

Women experiencing fatigue from long COVID have expressed how exhausting it is to constantly meet with physicians who do not believe them. Expending all of their energy visiting healthcare providers makes it harder to maintain their jobs and take care of household responsibilities. Many women with long COVID have reported experiencing heightened financial hardship, job insecurity, and familial conflicts as a direct consequence of their energy depletion. 

Long COVID symptoms in women are often brushed aside as mental health problems. In a research article focused on the experiences of individuals with long COVID, one female nurse explains that her colleagues thought she had anxiety when she experienced heart issues from long COVID. She continues, “I asked for help and did not receive it. It was very hard. I don’t know if it was the physical pain caused by the symptoms that were more difficult, or if it was the lack of understanding from my colleagues”. When patients feel unheard explaining their symptoms, they feel unvalued by their physicians and many are motivated to turn away from the healthcare system entirely.

Suggestions for improving long COVID care

To ensure that women with long COVID can receive the care they deserve, healthcare providers must address their own hidden gender, racial, and other biases. Bias is a significant problem in healthcare. When physicians do not address their own biases, they risk inadvertently lowering their quality of care and contributing to health inequities. Acknowledging and addressing bias improves clinical reasoning, patient safety, and healthcare outcomes. 

Collaboration with other healthcare professionals is another essential element to effective long COVID treatment. Dr. Azola closed our interview stating: “When we signed up to become doctors, we signed up to help people. If the traditional ways of treating diseases aren’t working, it’s our job to figure out new ones.” As healthcare providers collaborate with long COVID experts to research more effective treatments, they will be better equipped to understand and manage long COVID cases. 

Collaboration is also needed between patients and physicians. While the healthcare provider is the expert in medicine, the patient is an expert on their feelings and experiences and is well-positioned to provide clinically relevant information. It is important for both the healthcare provider and the patients to respect each other’s expertise and partner together to make decisions on continued treatment. This united decision-making leads to increased patient trust, treatment adherence, and visit satisfaction.

The reality is, not enough is known about long COVID. As healthcare providers address their hidden biases, collaborate with other healthcare professionals, and embrace shared decision-making, they will improve the quality of their patient care and reduce health inequities, leading to better long COVID outcomes for all. 

Image credit: Image by SouthWorks is licensed by iStock.