17 May 2022
Recent years have been particularly challenging for many of us. The global pandemic has taken its toll on our mental health. Communal stress and loneliness are felt even stronger by people with psoriatic disease who worry about whether they will be able to continue treatment during these times of uncertainty. This makes it all the more important that we as patient associations talk about mental health issues among people with psoriatic disease.
The South African Psoriasis Association is rising to the task. Their approach: hosting a mental health presentation series online. Beginning in 2021 and continuing into 2022, a range of mental health experts have addressed the South African psoriatic disease community. Topics covered have included issues around sleep, grief, coping skills, anxiety and stress which all affect people living with psoriatic disease and coping with the current COVID-19 pandemic. “Mental health is such an important aspect in all our lives and particularly for persons living with psoriasis who face extra challenges,” says Veronica Mitchell, Secretary of the South African Psoriasis Association. “With the COVID-19 pandemic having disrupted our traditional activities, we needed to think differently regarding how we support our psoriasis community” The team at South African Psoriasis Association found experts from a variety of disciplines to join the series, including psychiatrists, psychologists, coaching counselors, an occupational health and wellness specialist and more recently, an energy healer.
Originally, the presentations were conducted through Zoom. This decision was practical, but also tactical. In the absence of physical interactions, the mental health series offered a virtual community space for people living with psoriatic disease to collaborate and engage. Furthermore, it was assumed to be a widely accessible platform. However, SAPSA found that Zoom was still difficult to access for some people who did not have WiFi connections, available data, or cell phones able to host the app, or were just too busy at that time. Hence, recordings have been shared and new ways of engaging with the community are being considered.. Veronica explains that the mental health sessions enable us to dig more deeply into patient needs and engage with conversations that are relevant to them and can be beneficial to different individuals in their diverse population group.
The South African Psoriasis Association’s efforts were made possible through funding received from IFPA’s 2021 Solidarity Fund. In 2022, the association is developing another Solidarity Fund grant to develop a digital performance of poetry. The creative and inspiring project will feature renowned South African poet Siphokazi Jonas. The project aims to highlight diversity in psoriatic disease. “When it comes to psoriasis advocacy, [representation] has been predominantly Eurocentric and ill-fitting for an African audience,” says Veronica. “The people who are pictured and represented in psoriasis advocacy are mostly white and presented in a European context with a European lifestyle. In reality, we know that psoriasis is a condition that affects people of all skin colors and backgrounds..This initiative has a huge potential for reaching an audience that is seldom represented.”
Siphokazi’s enchanting and moving collaboration with the South African Psoriasis Association is set for release on World Psoriasis Day, October 29th, 2022. It will be translated into many languages and distributed throughout Africa and the rest of the world.