Shared insight on the psychological and social impact of vitiligo, along with practical advice on how to communicate with and support patients.
William Damsky, MD, PhD: Something I hear over and over again from patients, with vitiligo and otherwise, is that people often think they’re contagious. So this is a really difficult way to go about life. I think it’s, of course, a disease that we really want to take seriously. I feel like the psychosocial impact is so important. I’m curious what your perspective on the matter is. How do you support patients through this, outside of medical treatment?
Seemal Desai, MD, FAAD: I think you hit the nail on the head. This is a disease that should be treated by all of us as a medical skin condition. This is not a cosmetic disease, and that’s actually one of the first things I tell my patients. When I walk into an examination room, they’re coming to see me as a pigment specialist; I have patients who come from all over the country, some internationally, and the level of anxiety, you can almost cut the tension with a knife when you walk into some of these rooms with these patients, as you know. Part of that is because it’s such a stigmatizing disease in many cultures, especially from my background, which is from the Indian subcontinent. Many of my patients are from African countries, even Latin American countries. And of course, in Asia, skin pigmentation is very much culturally linked to one’s self-identity and oftentimes, in many cultures, linked to socioeconomic status and the way they’re viewed in their community and culture.
I’ve heard everything from, “You need to fix this for my child or they’re never going to get a marriage proposal,” to, “They’re never going to be accepted into school. This is not accepted in our families.” People get disowned. This leads to a profound psychological impact. I’ve seen a lot of cases of major depressive disease, or hypomanic disease, also unfortunately, suicidal ideation in some patients who have been ostracized from their families. This is real, and it’s something that I think we have to tackle head on. One of the things I do with my patients is to acknowledge that. I think we have to say, “This must be having a profound impact on you. Tell me about how you feel.” It’s really fascinating how many people come to me, and they’ve seen great colleagues who’ve treated the disease, or attempted to treat the disease, but really that 5-minute discussion and just asking the patient, “Really be honest with me and tell me how you’re feeling.” I hear very frequently, “Yes, I don’t feel like going to work. I’m really glad that I’m working from home and virtually so I don’t have to show someone my skin.” I’ve heard that a lot during COVID-19. I’ve heard a lot about, “Oh, I like doing Zoom meetings because then I can cover up with makeup and no one can see that the makeup doesn’t really match my normal skin.”
So, these impacts are profound. I think from a practical perspective, I do get psychological therapy for some of my patients. I do have a clinical psychologist and a psychiatrist in my referral network for some of the patients who need it, and there are patients who need that, and it’s OK. I think making sure patients understand that this is something that is very much linked to one’s sense of beauty and their own identity, especially in many cultures, is important to tackle head on.
William Damsky, MD, PhD: Thanks, that was a beautiful summary of the impact of the disease. I really cannot agree more, the profound impact that this medical disease has on patients’ quality of life. I fully agree with you that acknowledging how difficult it is can be therapeutic to patients. I’d love to talk about treatment; I think we will soon, but I’d like to also acknowledge how difficult treatment can be. It requires a real commitment. I think acknowledging that treatment is not easy can also really help support our patients.
Transcript edited for clarity.