- The majority of long-haulers report experiencing stigmatization because they have long COVID.
- Many find their doctors to be dismissive of their long COVID symptoms, with some even denying its existence.
- Self-advocating can be difficult but ultimately necessary.
Anywhere from 15 to 45 percent of those previously infected with COVID-19, regardless of infection severity and hospitalization status, develop long COVID symptoms. Despite such a startlingly high prevalence, many clinicians still fail to recognize long COVID or know how to treat its diverse symptoms. Even worse, this often leads to long-haulers feeling dismissed and ignored by clinicians who too commonly deny the existence of long COVID or dismiss the symptoms as being psychosomatic in nature.
Discrimination against and stigmatization of this invisible illness appear to be rampant, based on recent studies. In one study conducted in the UK, the overwhelming majority of respondents—95 percent!—reported experiencing stigma at some point. More than 60 percent of respondents felt the need to be cautious about whom to disclose their illness to, and 34 percent of those who did disclose their condition regretted having done so due to the response they received.
Family members, spouses, friends, employers, and even medical professionals have all been implicated in the stigmatization of long COVID.
Some long-haulers face additional scrutiny and criticism at work from those who don’t understand why their colleague can no longer perform at the same level they once did.
Family members question the validity of an illness they can’t see or don’t understand that prevents a loved one from fully engaging in family activities.
Spouses may resent the loss of a partner who may struggle to participate in parenting and household chores.
“I am a nurse, and there was no acknowledgment from my colleagues. Everyone thought I had anxiety when I had tachycardia... 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 was more difficult or if it was the lack of understanding from my colleagues… (Samper-Pardo, et al., 2023).”
As hurtful as it is for loved ones to not believe, it can be dangerous when medical professionals dismiss long-haulers’ symptoms and concerns. This, in turn, compromises an individual’s engagement in health-promotive behaviors and contributes to poorer health outcomes, depression, and lower quality of life. What many find is that they are now newcomers to a long line of medical stigmatization that has historically included HIV, chronic fatigue syndrome, Lyme disease, fibromyalgia, lupus, and more.
It shouldn’t be necessary to have to be your own healthcare advocate just to be heard, but what many long-haulers find is that this is their unfortunate truth. Many barriers exist that can make self-advocacy difficult, from cultural barriers and health literacy to just personal comfort with assertively communicating your needs.
Here are strategies that you can use to help become your own healthcare advocate:
Educate yourself and others about long COVID.
There are over 300 symptoms associated with long COVID. These symptoms span most organ systems, including cardiovascular, pulmonary, neuropsychiatric, endocrine, gastrointestinal, dermatologic, etc. Common symptoms include postexertional malaise, muscle pain, fatigue, GI upset, “brain fog,” irregular menstruation, and hair loss.
In addition to these symptoms, many long-haulers develop new onset of medical conditions, including cardiovascular and thrombotic disease, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), dysautonomia (typically postural orthostatic tachycardia syndrome or POTS), and sleep disorders.
Review your after-visit summary or medical records.
It is imperative that long COVID be properly coded in patients’ medical records, both for long-term patient care as well as for tracking and research purposes. Current guidance (as of October 2021) is for clinicians to list Post COVID-19 condition, unspecified (U09.9) secondary to the specific codes for ongoing conditions secondary to COVID-19 infection (e.g., shortness of breath, fatigue, myalgia).
It’s OK to ask for what you think will be helpful.
Research supports a multidisciplinary approach that may include a variety of specialists, such as speech pathology, occupational or physical therapy, behavioral health, endocrinology, cardiopulmonary, and cognitive rehabilitation therapy.
If you’re struggling with symptoms and they’re having a significant impact on your ability to function, discuss these concerns with your doctor. It’s OK to discuss with your doctor referral options and to advocate that a specialist referral is necessary.
Know what treatment options are out there.
Currently, there are no consensus treatment guidelines for long COVID. However, there are a wide range of recognized treatment options that have been helpful for many. These include, but are not limited to, dietary change (e.g., antihistamine diet, MIND diet), dietary supplementation (e.g., pre- and pro-biotics), gradual exercise therapy (e.g., Levine protocol), and behavioral health.
Bring a checklist.
It may be helpful to use a template like the “Healthcare Appointment Checklist for Post-COVID Conditions” developed by the CDC. This will help you ensure you have all the information you need to be a helpful collaborator in your healthcare.
Bring supporting information.
It can be difficult advocating for yourself. You may not be a medical professional, and you may not know how to communicate your concerns most effectively with your medical team. It’s OK to bring support documentation, such as this article. Other helpful resources include “Post-COVID Syndrome” from the American Academy of Family Physicians (AAFP) and the CDC’s “Post-COVID Conditions: Information for Healthcare Providers.”
Davis, H., McCorkell, L., Vogel, J., & Topol, E. (2023). Long COVID: major findings, mechanisms and recommendations. Nat Rev Microbiol, 21(3):133-146. Doi: 10.1038/s41579-022-00846-2
Ireson, J., Taylor, A., Richardson, E., et al. (2022). Exploring invisibility and epistemic injustice in long COVID: A citizen science qualitative analysis of patient stories from an online COVID community. Health Expect, 25(4): 1753-1765. Doi: 10.1111/hex.13518
Samper-Pardo, M., Oliván-Blázquez, B., Magallón-Botaya, R. et al. (2023). The emotional well-being of Long COVID patients in relation to their symptoms, social support and stigmatization in social and health services: a qualitative study. BMC Psychiatry, 23(68). Doi: 10.1186/s12888-022-04497-8
Scholz, U., Bierbauer, W., & Luscher, J. (2023). Social stigma, mental health, stress, and health-related quality of life in people with long COVID. Int J Environ Res Public Health, 20(5): 3927. Doi: 10.3390/ijerph20053927