Cultural Context and response to COVID 19 in people of color with eating disorders
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Cultural Context and response to COVID 19 in people of color with eating disorders by Norman H. Kim, Ph.D.
Like most if not all of you, I have been sequestered with my family and working from home. Unlike most of you, I am writing this from Brooklyn, NY, among the hardest hit boroughs in the worldwide epicenter of the outbreak, New York City.
Among the countless tragedies accompanying the worldwide COVID-19 pandemic, one of the lesser discussed but enormously impactful consequences in the United States is what it reveals about long standing socioeconomic disparities and the disproportionate level of devastation COVID-19 has wrought in minority and marginalized communities.
There are several variations of an old adage in many African American communities that has been revisited during this current crisis: “When white folks catch a cold, black folks get pneumonia.” At first COVID-19 was called “the great equalizer” because no one seemed immune from its destructive, often fatal effects. While it is true that the virus can affect anyone, it is now clear that the severity and mortality risk of COVID-19 is disproportionately affecting people of color, who tend to live in densely concentrated metropolitan areas, like New York.
According to the NYC Health Department, Latinos and African Americans are dying from COVID-19 at twice the rate of white or Asian New Yorkers. This pattern can be seen with alarming consistency across the country in cities with large minority populations, where, according to the Washington Post, rates of infection among African Americans are elevated as much as 3x higher than white residents, and death rates as much as 6x higher.
It goes without saying that people with more resources get more and better healthcare throughout their lifespan. The chronic, pre-existing health conditions which put people at significantly greater risk of complications from COVID-19, and which disproportionately affect many people of color are not necessarily indicative of genetic or biologic vulnerabilities as they may initially seem. They are, in fact, much more indicative of societal inequities and the legacy of growing up poor, marginalized, undocumented, or all of the above.
The most vulnerable and the marginalized are often the very people we are asking to also step up, take care of, and protect the rest of us though as a society we have not adequately protected them. They work in our hospitals, our warehouses and grocery stores; they deliver our packages and our mail; they drive our buses and trains. Many of them do not have the flexibility to work remotely and must make the difficult choice to either work and risk exposure or not work which means not being able to afford food, housing, and healthcare.
COVID-19 has revealed just how paper thin the alluring veneer of equality and equity is.
So what does any of this have to do with eating disorders?
There are many direct impacts of COVID-19 on our patients, especially those who come from marginalized communities and identities who might be at particular risk.
Eating Disorders thrive and flourish in isolation. We are now living in some state of quarantine and extremely limited social interactions. As a profoundly social species whose very survival and place at the top of the ecological food-chain was dependent upon our abilities to form cooperative and social bonds with one another, we are also experiencing the challenge of doing something that goes against the instinct in every strand of our collective DNA.
Prolonged social isolation is associated with a host of serious consequences: increased anxiety and depression, sleep disturbances, negative impacts on our immune and neurocognitive systems, among other psychological and physiologic consequences. For someone struggling with an eating disorder, all of these consequences are potent factors that can also precipitate a relapse, exacerbate symptoms, and worsen the existing sense of shame and lack of self-worth. The lack of clarity on how long all this may last, the prospect that this may become a regular part of our lives if there are recurrences, not to mention the frightening consequences if one were to become infected, have created a collective sense of helplessness, hopelessness, grief, and, for many, loss. For people with eating disorders, this added anxiety can serve to reinforce feelings of helplessness and magnify already existing difficulties finding reasons for hope, core features for so many who struggle.
Many people with eating disorders who are also people of color, people from the LGBTQ+ community, people with disabilities, people from low-income backgrounds, people in unstable or abusive living situations, among others, have limited or unsafe options for social distancing. Organizations like the Trevor Project, the Human Rights Campaign, and other LGBTQ+ centers and organizations in the US have expressed particular concerns about LGBTQ+ youth and young adults who may be sequestering with family who are not supportive, rejecting, or abusive. Social distancing also removes essential sources of positive support from many people, which often happen at school or in the community. For people with eating disorders from these marginalized groups, the dual hit of less positive support and more negative support represents a significant risk for worsening of eating disorder behaviors.
Additionally, for those who have experienced food insecurity and are also struggling with eating disorders, the sight of empty shelves in grocery stores has additional powerful and visceral meaning and potential to trigger eating disorder behaviors. For those with eating disorders who also already feel marginalized and rejected from society due to their experiences of discrimination, objectification or stigmatization, being now physically isolated and unable to access their communities of support can intensify the loneliness and sense of valueless-ness that can be powerfully salient triggers for eating disorder behaviors.
At a systemic level, there are also other implications of COVID-19 as a field regarding those with eating disorders who come from and belong to marginalized communities. The systemic inequities that our nation’s experience with COVID-19 makes writ large are also the foundation of some of the same troubling challenges impacting people from marginalized communities who struggle with eating disorders and about which many of us have been raising awareness within our field. It is, in fact, the very reason that the IAEDP African American Eating Disorder Professionals and the People of Color Committees exist.
On the one hand, I recognize that there has certainly been greater attention being paid to the existence and impact of eating disorders on people from marginalized communities. It goes without saying that this is important and necessary. However, we are also at an analogous place to the initial messaging about COVID-19, namely that we recognize that it can and does affect all people. What is difficult to hear sometimes is the more accurate message which follows, namely that, just like this virus, eating disorders do not impact everyone it affects equally, nor does it impact everyone in the same way. Furthermore, what is an even more difficult conversation to have is “and what are we willing to do about it.”
As with COVID-19, people with eating disorders who have more resources get more and better care. Treatment can be challenging to access and is expensive, treatment from a specialist even more so. People from marginalized groups who are struggling with eating disorders remain underrecognized by professionals and consequently do not have the same level of access to much needed care. When they do receive care, it is most likely neither by a specialist, nor by someone who might share their background or experiences. As long as people from marginalized communities who struggle with eating disorders continue to face barriers resulting in them being absent from both the conversation as well as from treatment, they will be disproportionately impacted by this illness.
Telehealth was discussed as one potential way to address access to care issues in healthcare even before the pandemic. There is clearly tremendous potential for its use and ability to reduce logistical barriers that prevent access to treatment. There are also potential cost savings and improved reach, at least within a given state, that make it a sound and important initial step towards lowering some of the obstacles to receiving care.
If the growth of telehealth continues beyond the current need for social distancing, as it and other innovative solutions to care delivery very much should, we have to be thoughtful that this solution to accessing care does not itself create another layer of inequity where people with means get even more flexibility and options in how they receive treatment for eating disorders. This might only widen the existing gap. For example, people without the same level of access to smartphones, computers, reliable and fast internet connections, and a safe and private space within their homes or workplaces to have sessions may simply face additional, different barriers rather than having them removed altogether. Nevertheless, the creative and innovative use of technology to aid in providing care has the potential to right many wrongs, especially if serving these underserved communities is an explicit goal rather than an afterthought.
There is also the significant structural issue we face, particularly stark in our eating disorder community, related to the availability of clinicians from diverse backgrounds. Until we adequately address this fundamental pipeline issue, good intention and training can only take us so far in terms of meeting the urgent and unmet needs of large communities of people with eating disorder who are not currently being served as they deserve to be.
As a final thought, our eating disorder community faces the same core question that we face as a society: When the pandemic subsides and we can start to resume our lives, will we just go back to business as usual or will we take away any lessons about the fragility of our systems and start to work together to make some much needed changes? We may not be able to do much about the larger systems in which we all live, but we can certainly do things within our community of eating disorder professionals to make treatment more accessible and appropriate for those who remain at the margins.
I for one find solace in this reminder of how interconnected and interdependent we are on one another. This has always been the case, of course, and it is tragic that it has taken a global tragedy for us to be reminded of this truth. Our interdependence is not a sign of weakness or vulnerability, it is our greatest strength and always has been. So at least within our family of people who are dedicated to serving those struggling with eating disorders, let us resolve to take this reminder and do something transformative with it.
Norman completed his B.A. at Yale and his Ph.D. in Psychology at UCLA. His research and clinical interests include the neurobiology and social development of people with autism, the developmental course of bipolar disorder, and the treatment of anxiety disorders. In conjunction Norman has developed an expertise in treating and teaching about psychiatrically complex populations, and his primary areas of research and clinical interests are the application of a transdiagnostic framework for eating disorders, taking an evolutionary approach to shame and anxiety, and minority mental health. He is a regular national speaker, educator, and passionate advocate for eating disorder awareness and legislation with a particular focus on minority status and barriers to mental health care in marginalized communities. He co-chairs the People of Color Subcommittee of iaedp™, is on the inaugural Behavioral Health Taskforce for the Gay and Lesbian Medical Association, the co-chair of the Transcultural SIG for the Academy of Eating Disorders, a member of the Ethics Committee for the Residential Eating Disorder Consortium, and on the Advisory Boards of Recovery Warriors, the Multi-Service Eating Disorders Association, Spectrum CBT and Tikvah V’Chizuk. Norman is the co-founder and National Director of the Reasons Eating Disorder Center.