**3. Findings from the BIPOC long COVID study**

In Spring of 2022 I distributed an Intuitional Review Board (IRB) approved questionnaire to the online BIPOC women long COVID support group. The term BIPOC is used to refer to women of color. This group has been in existence since summer of 2020 and was featured in the Washington Post [5]. It is an online support group for women with long COVID. Women from around the world share their experience, symptoms, recovery tips, and support each other mentally as they deal with their newfound long COVID illness. The women in the group were asked to complete a study about their long COVID symptoms and experience.

Most of the women who completed the questionnaire (n = 46) were African American and college educated. **Figure 1** shows the top health complaints reported by the participants. Some of the women had even more health complaints then the complaints shown in **Figure 1**, but over 50% of the women who completed the questionnaire experienced at least 18 different health complaints. Despite this, most of the women (63%) report not being believed by their doctors about their health complaints. And of the 27 women who went to the hospital, 19.6% of them report being drug tested for narcotics when they went for medical assistance. More than half of the women (78.3%) report their trust in doctors has been lowered since contracting COVID-19.

The total devaluation by doctors during the COVID-19 pandemic happened to a lot of people, especially women and in particular women of color. The questionnaire asked women to report tips on what they did to find the right doctor. Many of the women reported never being able to find the right doctor. Others reported having an emotional breakdown in the office before being heard. Those with long time doctors reported that their doctors focused on treating their symptoms. **Box 1** highlights tips

Kept searching until I found someone who would listen. Chose a DO instead of an MD. After my positive antibodies test, my doctor took me seriously. Research and read reviews. And have a doctor that is a black female. I do not tolerate gaslighting. My PCP referred me to the new Covid clinic within the hospital.

#### **Box 1.**

*Select responses to question: what did you do to find the right doctor for you?.*

*How COVID-19 Brought Medical Gaslighting to the Forefront and Made Invisible Illness Visible… DOI: http://dx.doi.org/10.5772/intechopen.107936*

extracted from the questionnaire that showed how some women handled navigating the health system, while dealing with medical gaslighting.

**Figure 1.** *Top Long COVID Health Complaints in BIPOC Women.*

The sample size for the BIPOC Long COVID Study is small. However, results are consistent with news reports that highlight how doctors showed a pattern of dismissing long COVID patients [33–35]. The COVID-19 pandemic shed a huge spotlight on the sexism and racism prevalent in medical culture. As observed in **Figure 1**, the top three health complaints reported by BIPOC women with long COVID are headaches (100%), fatigue (87.5%) and neurological problems (87.5%). These symptoms are not typically ascertainable from a medical test, making them difficult to diagnosis by a doctor. Given past research, it is then not surprising that more than half of the women who completed the BIPOC Long COVID questionnaire reported experiencing medical gaslighting. Clearly, the findings from the BIPOC Long COVID Study highlight that it has been nearly impossible for many doctors to think outside of the box when it comes to diagnosing long COVID. The COVID-19 pandemic shed light on how the ridged frame of thinking can be disastrous during a pandemic when scientific information is rapidly changing and evolving.

### **4. Recognizing invisible illness**

Before the pandemic, the world was not thinking about the nearly 17–24 million people around the world who have CFS/ME [36]. Nor were we thinking about the 2–4% of people around the globe with fibromyalgia [37]. Or the estimated 14% of the global population that has had Lyme disease [38], or the estimated five million people around the world with Lupus [39]. All four of these illnesses are chronic conditions that disrupt the immune system and are similar to long COVID [40–43]. The sheer volume of people who fell deathly ill with long COVID at once, and the relentless advocacy of patient-led groups, has led to a global movement that has commanded

post-viral illnesses take center attention on the world stage. Long COVID patients taught the world to see invisible illnesses.

When our mind thinks of the word *disability,* most often it connects to a *visible* disability (such as someone who is in a wheelchair). We seldom think about *invisible* illnesses (also known as silent illnesses) that cause a person to be disabled. Invisible illnesses are wide ranging, for example neurological problems, mental health, digestive and addiction issues can all be classified as an invisible disability [44]. The main characteristic of an invisible illness is that the primary health complaint is not visible or easy to see, and for some invisible illnesses a medical scan or bloodwork cannot detect the health problem. Even though the invisible illness cannot be seen, and the person who has the invisible illness might appear normal, it does not mean the person living with the illness is making it up. Research finds that women with invisible disabilities often encounter microaggressions from medical professionals and are not believed or taken seriously because they appear healthy or are attractive [45]. Just because someone does not look sick and is smiling or having a good time does not mean that they are not disabled or do not have an invisible illness.

When people come to doctors complaining of unexplainable debilitating fatigue not explainable by another diagnosis, they are often diagnosed with ME/CFS. If the predominant problem is unexplainable pain on certain places on their body, then the patient is streamed into the fibromyalgia category. Similar to long COVID, ME/ CFS is an invisible illness that causes extreme fatigue that is not resolved by rest [46]. People with ME/CFS can face a host of other symptoms some including headache, sleep disturbances, neurological issues and sore throat [47]. Severe ME/CFS can restrict a person to being bed bound because of the extreme pain that is caused by movement, light, and sound [47, 48]. Few fully recover from ME/CFS, and most patients only experience symptom reduction [48] ME/CFS can cause social isolation and job loss [47, 48]. Like ME/CFS, one of the main health complaints for fibromyalgia is fatigue [49]. However, with fibromyalgia, chronic pain tends to center around specific trigger points. Symptoms of fibromyalgia also include sleep problems, headaches, and gastrointestinal issues to name a few [50]. People with ME/CFS or fibromyalgia are often met with skepticism by their doctor, family or friends. Many people do not fully understand how debilitating ME/CFS or fibromyalgia can be for a person. Women are more often diagnosed with ME/CFS, and fibromyalgia as compared to men [50, 51] and people of color are often underdiagnosed by doctors, yet it has been identified that people of color have a higher prevalence of ME/CFS in the general population [51, 52].

Chronic Lyme disease and Systematic Lupus Erythematosus (lupus) differs from ME/CFS and fibromyalgia in that the doctors can identify a cause of the condition [53, 54]. Typically, if a patient has symptoms of immune system dysfunction and has been bitten by a tick, a doctor is able to treat the acute Lyme infection [54]. Chronic Lyme disease has a host of symptoms, some including extreme fatigue, chronic pain, and neurological problems to name a few [54]. For lupus the patient undergoes a series of major blood tests to identify if a patient has lupus. Nevertheless, even though there is a blood test for lupus, lupus is an autoimmune disease that is considered an invisible illness because some symptoms, for example extreme fatigue, are not visible [53]. Lupus can trigger many health complaints, some experience chronic pain, hair loss, cardiovascular problems, stoke, and rashes. Lupus occurs more often in women as compared to men [53]. In America, Lupus is more commonly seen in African Americans, followed by Latinx and Asian Americans [39]. Outcomes are often worse for African American women with lupus [55].

#### *How COVID-19 Brought Medical Gaslighting to the Forefront and Made Invisible Illness Visible… DOI: http://dx.doi.org/10.5772/intechopen.107936*

Long COVID is now part of the growing list of invisible illnesses. As evident in **Figure 1**, most of the women are experiencing health complaints that are invisible. As a bystander, you cannot see the pain from pins and needle sensations that 70% of women in the BIPOC Long COVID Study report having. The bystander can also not see the weakness and body pain reported by 70 and 72.5% of the women respectively. The joint pain (70%) and muscle pain (70%) is also invisible. This means that most of the women in the BIPOC Long COVID Study are in pain. In my personal experience, for the past 2-years, I have not awoken without a headache and have not experienced a day of being pain-free. As I sit here and write this chapter, I appear normal and healthy. However, I have ringing in my ears (tinnitus), a throbbing headache mostly contained to my left frontal lobe, sharp shooting pain on my right frontal lobe, a pins and needles sensation radiating through my arms and legs, I have chest pain and sensitivity to heat and external stimuli. I have joint pain that feels like arthritis, making every stroke of the keyboard painful. Despite the pain and extreme fatigue that I experienced for the past 2-years, my situation is improving and that gives me hope to a full recovery. Unfortunately, I cannot say the same for many women in the BIPOC Long COVID Study. About 70% of these women report that they do not believe they will ever get better.

People who have long COVID have been turning to the ME/CFS community for advice and guidance since people with ME/CFS have been dealing with the ramifications of chronic fatigue for decades. The world has largely ignored people with ME/CFS, but COVID-19 has helped bring their advocacy efforts to the forefront. Long COVID is an invisible illness that shares many similarities to ME/CFS. Many long COVID patients have learned from people with ME/CFS that pacing is important. Pacing is a technique to conserve energy to get the body through the day [56]. It is imperative that a person with long COVID learns to "pace" themselves. Unfortunately, even people with long COVID are still not aware of this powerful technique to help manage long COVID. In the BIPOC Long COVID Study, roughly 48% of women reported never having heard of pacing. Public health programs focused on long COVID recovery and treatment need to raise awareness about pacing, because many people with long COVID are going to have a problematic recovery process if they do not learn to appropriately manage their energy throughout the day.
