On Capturing Well-being While Immunocompromised...
Welcome! We are happy you are here. This virtual gallery displays photographs taken and curated by individuals across the United States who have compromised immune systems, making them at higher risk for COVID-19 disease transmission. These images were shared with us as part of a study that aims to learn about what it is to live in an immunocompromised body in a world facing a global pandemic. While this gallery does not show all of the photographs gathered through our research, the photographs highlighted show examples of the challenges those at high risk can face as well as the resilience they have forged as a result.
In this study, we asked participants to reflect on structural changes and their emotional experiences during COVID-19 by taking photographs and sharing stories. In general, participants revealed significant distress stemming from difficult feelings, prolonged isolation, safety fears, and stress surrounding job loss, disease management, or other outside stressors. These challenges often caused mental health difficulties, leading many to prioritize wellbeing in their lives. Intentionally engaging in wellness strategies was often a new experience, but was deemed necessary to be able to maintain isolation for a prolonged period of time.
With so much fear surrounding one's health status, participants sought to find comfort and pockets of escape to manage uncertainty amid their socially isolated lives. Participants also made efforts to reconnect with things that brought meaning in their lives, while safely maintaining social and familial connections.
It is important to note, while most of our participants experienced negative changes to their wellbeing as a result of COVID, for some, particularly those with more severely compromised immune systems “not much had changed.” For example, one participant shared “those of us who are sick enough do not leave on a regular basis...the world is not much different until we get outside of the home.”
Hearing the voices of those at high risk for COVID-19 disease transmission has important implications as we continue to move forward in such uncertain times. First, we must prioritize the wellbeing of those at high risk and be aware of how our adherence to guidelines impacts the mental health and safety of these individuals. We must also think about the daily supports for these individuals outside of pandemic times, as many have had these struggles long before COVID-19. While, this study revealed the resilience of this group, this resilience was recognized as necessary to adapt to the community and structural failures that perpetuated safety risks and distress for those at high risk. Thus, we must consult those at highest risk for infection as we begin to think of creative solutions to improve this community’s wellbeing while also reopening our country.
If you identify as a member of a chronic illness or immunocompromised community, we hope this gallery helps you feel a little less alone. If you were a participant in this study, thank you so much for sharing your stories with us. We hope this exhibit helps us realize the importance of maintaining our social distancing efforts as a community. We are truly stronger together.
Laura & Samira