**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) [57–59]. 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.

### **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**.

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

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


#### **Box 2.**

*Recovery tips from BIPOC women with long COVID.*

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.

## **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.
