Women with rosacea expressed feelings of low mood, anxiety, shame, rejection, and embarrassment from living with the disease, as reported in a study published in the British Journal of Dermatology.
Researchers sought to assess the subjective lived experience of women with rosacea with use of interpretative phenomenological analysis (IPA). A total of 6 women with a clinical diagnosis of rosacea were enrolled, all of whom were White. Their average age was 54 years (range, 32-69 years), and their average duration of living with rosacea was 11 years (range, 1-24 years).
A trainee clinical psychologist conducted semi-structured interviews, which lasted an average of 57 minutes (range, 38-72 minutes). All interviews were recorded, and transcripts were analyzed according to IPA guidelines, with identification of emerging themes.
There were 2 superordinate themes (concealment and “it’s a battle isn’t it”), as well as 7 subordinate themes, identified during the data analysis. Participants’ experiences were characterized by an internal struggle to feel in control of their skin disorder and externally learning to navigate complex social interactions. The women described a relentless battle with rosacea, trying to conceal the visibility of their skin changes to be “normal” and “fit in with everyone else.”
All participants related the financial impact of their perceived need to use different treatments to try and “stay on top of” their disease. When they believed that they were losing this battle and skin changes were visible, the women described a sense of “vulnerability,” feeling “like a second class of people,” “like a shell,” and “disgusting.”
When their rosacea could not be concealed, 5 women described being rejected by others and causing pain and emotional distress in some of their relationships. The women were also uncertain about the cause their rosacea. They used such phrasing as “something I’d done,” “my fault,” “parasites,” “the immune system,” “hormones,” “pregnancy,” “genetics,” “old age,” and “God.”
Although 1 woman said that she was “scared” after her diagnosis, others described how it helped them make sense of their experiences, reducing feelings of “embarrassment,” “blame,” and “shame.”
The researchers noted that the inclusion of only White women was a limitation to their findings.
“When providing a diagnosis, clinicians may wish to provide a space where patients’ initial thoughts, feelings, and coping strategies can be explored,” the investigators advised. “Realistic conversations about prognosis and the limited effectiveness of treatments may be helpful. Training and consultation may be beneficial to support the exploration of psychological distress and signposting to appropriate services.”
Carter C, Martin K, Gordon C, Goulding JMR. Exploring the lived experience of women with rosacea: visible difference and psychological impact. Br J Dermatol. Published online September 28, 2021. doi:10.1111/bjd.20768