Open access peer-reviewed chapter

How COVID-19 Brought Medical Gaslighting to the Forefront and Made Invisible Illness Visible: Lessons from the BIPOC Long COVID Study

Written By

Margot Gage Witvliet

Submitted: July 22nd, 2022 Reviewed: September 7th, 2022 Published: October 23rd, 2022

DOI: 10.5772/intechopen.107936

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Abstract

Back in March 2020 I became ill with COVID-19. It almost killed me. My journey with the illness is documented publicly and I am featured in New York Times, USA Today, Washington Post and People Magazine to name a few publications. Health Magazine named me one of seven African American women unsung heroes of COVID-19. Last year in 2021 I was invited to address President Biden’s COVID-19 Task Force Team. In the medical community, there is a pattern of treating people differently based on their gender, sexual orientation, age and disability status. COVID-19 shed light on the need for the medical community to shift to a modern outlook in the treatment of patients with invisible illnesses. In this chapter, I will discuss what is long COVID, findings from the BIPOC Long COVID Study, and how long COVID made invisible illnesses such as chronic fatigue syndrome, fibromyalgia, chronic Lyme disease and lupus visible. Recommendations are given on long COVID recovery.

Keywords

  • long COVID
  • medical gaslighting
  • invisible illness
  • African American
  • COVID-19
  • chronic fatigue syndrome
  • RECOVER
  • integrative medicine
  • health disparity

1. Introduction

Back in March 2020 I took one of the last flights allowed in from Amsterdam, The Netherlands to Houston, Texas. I was a perfectly fit, healthy young woman who did not smoke. I was an active social epidemiologist with a tenure-track assistant professorship at an American university with my entire life ahead of me. The idea that I could die from an airborne illness before I turned 40 was not in my reality. I had no autoimmune diseases. I am not someone who has struggled with a chronic illness, in fact I have rarely been sick with the common cold or flu. I have never broken a bone and I had no co-morbidities. I have two healthy children and before COVID-19, I was a hands-on active mother. Women in my family have consistently lived into triple digits.

By the second week of March all of that changed. For me, Covid-19 started out like the flu. Initially I did not think I had COVID-19, but rather that I was coming down with a bad cold. But my symptoms progressed quickly. By March 15, 2020, I had arrived home from a two-hour car drive, I sat outside to rest in my backyard, and I had an intense pain in my chest-- it felt like an elephant had sat on my chest. I stumbled inside and lay on my bed. I took deep breaths and waited for the pain to pass. At this point I knew something was terribly wrong, my heart had never felt like it would pop out of my chest in my entire life. The next day my symptoms worsened. I developed a slight cough, a headache and a sore throat—my sore throat has been ongoing for the past 2 years. To this day (June 2022), I still have a light sore throat, that intensifies after eating or talking for an extended period. My health rapidly declined after my heart issues arose. By mid-March I landed in the hospital because I could not breathe, and by the beginning of May, I had a seizure. Covid-19 almost killed me several times.

Doctors did not know what to do with me. I never had a fever, and I did not have a persistent dry cough, so even with my severe shortness of breath I did not present symptoms of how doctors expected COVID-19 patients to present. At that time, the American Centers for Disease Control (CDC) said that in order to have COVID-19, the patient had to have a fever. And so began my journey down the rabbit hole of the American healthcare system. I was not listened to by doctors, not taken seriously and infantilized. At one appointment, the doctor spoke the entire time with my husband, instead of speaking with me--the actual patient who was a 38-year-old woman with a PhD in social epidemiology and public health.

I joined a COVID-19 online support group, where I witnessed woman after woman, irrespective of their socioeconomic status, race or country location, share stories about how doctors were not believing them about their COVID-19 symptoms. Early in the pandemic, sharing your COVID-19 status publicly was taboo in the rural Southeast Texas town where I reside. But I decided that I would use the small platform that I had as an assistant professor to come forward about my health status and shed light on the fact that doctors were not believing women, and that women of color were having a particularly hard time being believed. Women of color were being drug tested and getting the police called on them at the hospital. In my own experience, when I presented at the emergency room with shortness of breath, I was always asked by hospital staff if I had “taken something.” I would get asked repeatedly if I had used drugs. I was not treated with compassion until after my drug test came back clean.

My goal is to transform my negative experience with COVID-19 and the American healthcare system into a positive teaching moment. I was one of the first people in Texas to be interviewed by the local news about my COVID-19 symptoms lasting longer than a few weeks. Following this, I wrote an article in The Conversation about my COVID-19 experience [1]. That article received over 400,000 views. My video diary that I made documenting my trip from Amsterdam to Houston during the pandemic was re-published across several media outlets and received over 20,000 views [2]. It was unexpected, but my COVID-19 advocacy work led to me being named by Health Magazine as one of seven African American women unsung heroes of the COVID-19 pandemic [3]. I was featured in several American media outlets, some including MSNBC, People Magazine, Washington Post, New York Times, and in international media outlets in the UK, Indonesia, Korea, and New Zealand. I presented a TEDx Talk where I spoke about the problem with doctors not believing patients with chronic illnesses and how doctors need to treat patients with compassion and drop their biases at the door [4].

My TEDx Talk received over one million views. I started an online Facebook support group for BIPOC women with long COVID. The group was featured in the Washington Post in 2021 [5].

Today I am a COVID-19 survivor. It has been over 2 years and I am still in recovery [6]. I am not as sick as I once was, but I am not 100%. I have been diagnosed with post-acute sequelae of SARS-CoV-2 infection (or long COVID). It is estimated that half of the people who survive COVID-19 will get long COVID [7]. Long COVID is a chronic debilitating condition that effects multiple organs, including the brain [8]. People with long COVID develop symptoms that are similar to myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) [8]. We also have chronic pain, and some develop renal, kidney and heart issues. Many continue to have pulmonary and gastrointestinal problems even after initial COVID-19 infection. The list of health problems caused by long COVID is wide ranging and diverse. Brain fog, mild dementia, pins and needle sensation, vision problems teeth and hair loss are just to name a few [8]. Long COVID is a debilitating health condition that severely impacts women more often than men [9]. Women aged 40–60 tend to experience more severe symptoms of long COVID [9].

I have been invited to address President Biden’s COVID-19 Taskforce team [10] and I am on the Publications Oversight Committee of RECOVER, a 470-million-dollar long COVID research project funded by the American National Institute of Health (NIH) [11]. In July 2021, because of my advocacy efforts and that of many other COVID-19 patient advocates, President Joe Biden announced that long COVID could qualify as a disability [8]. In this chapter, I discuss medical gaslighting during the pandemic, findings from the BIPOC Long COVID Study, and explain how long COVID made invisible illnesses like ME/CFS, fibromyalgia, chronic Lyme disease, and Lupus visible.

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2. Gaslighting during the pandemic

At the start of the pandemic in 2020 doctors knew very little about COVID-19. The CDC symptom guidelines were short. Doctors initially believed that a person with COVID-19 had to have a fever and a persistent cough to have COVID-19 [4]. Today we know that the list of COVID-19 symptoms is extensive [8]. We also know that a COVID-19 infection can cause post-COVID (also referred to as long Covid, chronic COVID, long-term effects of COVID, post-acute COVID-19), which is a post-viral condition where symptoms last 4-weeks or longer [8]. Currently there is no clear definition of long COVID, because COVID-19 is such a diverse illness, that manifests differently in each person, but researchers are working to change this [11]. Science has taught us that both adults and children can get long COVID [12]. The acute infection of COVID-19 does not have to be severe to get long COVID [13]. There are also people who have milder forms of long COVID and do not realize that they have long COVID [14]. For example, people who lost only their taste or smell, or people who only get headaches, and have no other health complaints. It is suspected that COVID-19 wreaks havoc in the mitochondria of immune cells and since mitochondria is paramount for cell survival this is one of the reasons why we can observe such devastating effects to health [15]. It is thought that long COVID patients have damage to blood vessels and nerve fiber damage [16], and this is harmful to all systems within the body, including the gastrointestinal and respiratory systems. It is also a possibility as to why in severe cases of long COVID exercise is excruciatingly painful. Science has found that long COVID causes brain inflammation, and it is one of the first viruses to break the blood brain barrier [17]. The neurological impacts of COVID-19 are profound, and it impacts cognitive ability. It is important to remember that people with long COVID have damage to their body that can cause unbearable pain even if medical tests or blood tests are not picking it up. The pain experienced by long COVID patients is unbearable. An increased risk of suicide exists in this population, and many have experienced psychosis [18].

When I became ill with COVID-19 during the first wave (March 2020), I never had a fever and never had a persistent cough. Given this, doctors did not initially believe that I had COVID-19. This made an already stressful medical situation even more horrendous. I was told by one doctor that my problems with breathing must be due to anxiety. Doctors tried to make me believe that my illness was all in my head. Since doctors could not ascertain what was wrong with me, they used mental health as a deflector instead of admitting that they did not have an answer for me on how to get well. In my case, it is true that I had anxiety, but my anxiety was not the reason I could not breathe. The fact that I could not breathe because my oxygen levels regularly dropped to as low as 60%, was the reason I had anxiety during my breathing attacks.

When COVID-19 raised my glucose levels, I was told by a doctor to watch my diet and exercise more. In essence I was blamed for my new-onset of high glucose levels, instead of the doctor connecting that the elevated glucose levels could be triggered by COVID-19. A few weeks later reports were published that COVID-19 can cause diabetes [19]. Further, the recommendation of a reformed diet and more exercise from the doctor was absurd, given that I was experiencing severe respiratory problems and post-exertional malaise. The doctor dismissed my issues and tried to make me believe that my health problems were my fault. The doctor assumed that I had a poor diet and did not exercise as the reason of why I now had elevated glucose levels. The doctor was treating me from a biased perspective instead of examining my entire patient history. What I experienced by this doctor and several other doctors both male and female from all varying racial and ethnic backgrounds is a term called medical gaslighting. Many people who initially became ill with COVID-19 during the first wave had an extremely hard time being believed by doctors when they presented with COVID-19 symptoms to emergency rooms. Unfortunately, dismissal and disbelief by doctors is still happening to this day. In some countries long COVID is not even recognized as an illness. A report out of Africa shows that even though doctors believe in COVID-19, patients and doctors are not recognizing the illness long COVID [20]. This is also happening in Trinidad and Tobago. Patients are being dismissed by doctors, and doctors are focused only on treating the symptoms without ever addressing the elephant in the room (i.e., long Covid).

When a person makes another person question their memory or perception of a given situation this is referred to as gaslighting. Internally I knew that prior to my COVID-19 infection I was a healthy person, and that my elevated glucose levels were not because of poor diet or lack of exercise, but that this doctor was attempting to make me doubt my own experience, which is a common characteristic of gaslighting [21]. Gaslighting is not just a medical phenomenon, it can occur anywhere and between anyone. Gaslighting is a form of psychological abuse that involves a power component, with people who use these tactics typically being in a position of power as compared to their victim [22]. The psychological impact left on the person who has experienced gaslighting can be profound [22]. Patients who experience medical gaslighting might start to question their own reality, especially if the person doing the gaslighting is a medical doctor [23]. Anxiety, hypertension and depression can develop in a person experiencing medical gaslighting, resulting in loss of patient-doctor trust, and in extreme cases, some patients might withdraw from social life [24, 25].

Medical gaslighting does not happen to everyone equally. It occurs most often to women and people of color. For illnesses where there is no clear test to ascertain if a person has the illness, medical gaslighting is a common occurrence. For example, a study found that women who present with symptoms of abdominal pain are not believed by doctors in the same way men are believed who report with the same type of pain [26]. Medical gaslighting is particularly a problem when there are no objective tests to diagnosis the health complaint. Patients in this “difficult to diagnose” category are often blamed and are not believed by doctors [25]. Doctors might dismiss difficult to diagnose patients with having a mental health issue, rather than having a physiological problem, which leads to devaluing of the patient [27, 28]. Disparity in treatment by doctors because of a patient’s gender, race, sexuality, age or disability status has been a problem for people with chronic illnesses long before the COVID-19 pandemic [29, 30, 31, 32]. Given that research has thoroughly documented bias in healthcare for decades, and little has been done to resolve this issue, the COVID-19 pandemic has highlighted that it is time for medical school curriculum to systematically address biases that doctors and other medical staff bring to the treatment room.

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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.

Figure 1.

Top Long COVID Health Complaints in BIPOC Women.

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

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Box 1.

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

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.

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, 34, 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.

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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, 41, 42, 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].

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.

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5. Where do we go from here?

The BIPOC Long COVID Study shares similar findings as compared to other investigations that show people with long COVID report a multitude of health complaints simultaneously (some including fatigue, chest pain, headaches, and so on) [57, 58, 59]. At a certain point, doctors will need to accept that even though the scientific community has not identified a clear definition of long COVID, because it manifests and impacts each person differently, we cannot deny that people are experiencing health complaints. The first doctor who took my complaints seriously was my neurologist. He was the first person to identify that the symptoms I reported appeared to manifest in the same way as ME/CFS. I had never heard of ME/CFS before talking to him.

It is important to acknowledge that a questionnaire implemented in an online support group has its limitations. Nevertheless, the stories shared by these women show a pattern and can teach the medical community how to deal with patients with invisible illnesses. The questionnaire asked women: What (if anything) do you think doctors or nurses could have done better when you came for medical help? Two main themes were identified 1.) patients wanted their doctors to listen to them, be patient, open minded, and compassionate 2.) patients did not want to be led to believe that their health problems were due to anxiety. One of the hardest things for a medical professional to have to admit is that they do not know how to help their patient. The findings from the BIPOC Long COVID Study highlight how it is imperative for doctors to have empathy with their patients, even for those patients who present with difficult to diagnosis illnesses.

Long COVID has affected millions of people at once, and because of our struggles, the people who have ME/CFS and those suffering from other post-viral illnesses have been brought to the forefront. The ME/CFS community has been largely ignored for far too long and research on post-viral illness deeply underfunded. According to research, ME/CFS impacts a great proportion of the population in the US as compared to HIV/AIDS and almost half that of cancer, yet ME/CFS research is one of the least funded research areas by the NIH [60]. Instead of starting from scratch, we should begin research investigations on treatment modalities for long COVID that is a continuation on the path that was already made by others who have been investigating post-viral illnesses like ME/CFS prior to the COVID-19 pandemic.

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6. Treatment tips

We must acknowledge that we cannot fit long COVID symptoms into a box. Long COVID recovery will require an integrative medicine treatment approach. Integrative medicine focuses on whole body healing [61]. Integrative medicine increases quality of life in cancer patients and increases patient satisfaction [62]. Western medicine has been slow to adopt integrative medicine into the healthcare system, [62, 63] leaving people with chronic illnesses at a disadvantage because of not using a whole-body approach to recovery. In order to make solid advances on COVID-19 treatment and recovery we need to raise awareness and educate doctors about long COVID symptoms. In addition to this, long COVID recovery should focus on healing both mental and physical health.

The women in the BIPOC Long COVID Study report doing the recovery work to take care of their mental health. Alternative practices to manage symptoms are a widely used approach amongst the women. The main alternative practices reported were meditation, followed by art therapy, acupuncture and herbs. Two women report doing physical therapy. All but seven of the women report being on vitamins, supplements, and probiotics. More than half of the women were on medicines prescribed by doctors. Some of the medicines included those for respiratory symptoms (e.g., Albuterol inhaler, Breo inhaler, zyrtec), others for mental health (e.g., Gabapentin, Xanax, Cymbalta, Wellbutrin XL), high blood pressure (benazepril), heart and diabetes medication, and medication for pain and sleep aids were reported. Other personal recovery tips shared by the women in the study are shown in Box 2.

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Box 2.

Recovery tips from BIPOC women with long COVID.

“Never take antibiotics while having Covid it will not treat viral infection and could lead to severe gut complications as in my case even if your symptoms are mild stay rested do not work out and keep eating healthy.”“Find at least one good support group. An online group is the best option for me. Stay current on new information. A good support group will provide information and links to studies and panel discussions. Be extra vigilant about what you put in your body. Start with one thing. I’m doing a deep dive into sugar. What it actually is and how it actually interrupts and eventually shuts down what our bodies are designed to do. Pay attention to what Covid is teaching you….”
“Take Vitamin Supplements; focus on getting sleep.”“Pay attention to your body and get emotional support!”
“Ginger tea, sunlight, vitamins.”“Rest a lot.”
“Surround yourself with people who are on the journey and who understand. Do not give up on yourself. Stay hydrated.”“To get medical support quickly. I feel my body went through more damage because of the medical delay in treatment.”
“Listen to your body and rest, not everyone will believe you, seek support groups.”“Get plenty of rest and drink water. These seem to make me feel better.”
“Try to avoid stressful situations if possible.”“Be prepared for a battle, advocate for yourself and do not stop fighting, even when it seems no one is listening.”
“Get dental checkup.”“Keep a personal medical journal.”
“Eat less processed foods. Rest, allow yourself to rest. Learn to listen to your heart rate. I use a Fitbit type of watch now, and any time my bp and heart rate starts to rise, it alerts me. I stop and force myself to breathe.”“Do not give up on getting better: stay active and Prayful; Do online Bible study lessons; be an interchange of encouragement to someone daily. I have a young lady that calls me so much with her problems that I get a break from thinking about mine. More happiness in giving than there is in receiving; Be peaceful and stay calm remember “A calm heart gives life to the body.” The Journal of the American Medical Association reports: “men who experience outbursts of anger have twice the risk of strokes as men who control their tempers.” Get a hobby. I like fishing or watching others fishing now that I experience pain.”

It should be noted that although the women share their experience and recovery tips, there is no cure for long COVID. None of the women in the sample were fully recovered. To improve quality of life I have found that targeted meditation helps manage symptoms. Everyone will not be able to complete physical activity, but as you progress in your recovery light low-intensity physical activity (such as a short slow walk, yoga or Tai Chi) might be possible. Listening to your body is important and can aid in the recovery process. Getting plenty of rest is necessary and monitoring vitals is useful along with drinking plenty of water and treating the symptoms. I also suggest doing intensive cognitive work for short periods of time (e.g., reading, writing or puzzles) to exercise your brain. Strengthening the gut by eating healthy, adding a probiotic to your diet and taking vitamins and supplements is also important.

Another important aspect of my recovery process has been to try to minimize stress as much as possible and do an activity that brings me joy daily. Your body needs rest, but ultimately it needs to feel safe so that it can take the necessary time to heal from the trauma caused by COVID-19. It is important to keep in mind that recovery is not a sprint it is a marathon. I do not look at my progress each day, instead I examine the trend of my progress overtime. I am not in the same state that I was at 6 months, or at 12 months or at 18 months and so on.

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7. Conclusions

The COVID-19 pandemic showed the world that we need to improve how medical doctors are trained. Medical gaslighting by doctors during the pandemic was a consistent pattern around the world. Medical gaslighting did not just happen to a few people, the blatant gaslighting happened to a substantial portion of the long COVID community. It has ruined patients trust in doctors. Medical school curriculum should be expanded to include formal training on how to recognize and reduce bias in healthcare settings. It should also include making integrative medicine the norm, rather than the exception. Even though people with long COVID have a long way to go with recovery, it is possible that with the right treatment, quality of life can be improved. The first step in accomplishing this is to remove doctors from your healthcare team who do not take your health complaints seriously. The second step is tapping into the power of integrative medicine.

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Acknowledgments

Thank you to the online BIPOC Women Long COVID Support Group for completing the BIPOC Long COVID Study. This research was funded by the Lamar University College of Arts and Science Dean’s Summer Fellowship.

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Written By

Margot Gage Witvliet

Submitted: July 22nd, 2022 Reviewed: September 7th, 2022 Published: October 23rd, 2022