The Vitiligo Patient Journey - Episode 6
Heather Woolery-Lloyd, MD, and Tarasha comment on the impact of vitiligo on a patient’s quality of life and the importance of support for patients with vitiligo.
Heather Woolery-Lloyd, MD: Tarasha, I want to talk to you about your journey. How did your friends and family react and support you when you got this diagnosis?
Tarasha: It was a shock to a lot of people. Recently I went to one of my sorority’s events, and I hadn’t seen one of my friends in 3 or 4 years. And she asked, “What happened?” That’s the common question…not “What’s going on?” but “What happened?”
And I said, “I have vitiligo, and I was diagnosed in 2020.”
And she’s like, “Oh, that’s what happened.”
I mentioned earlier that I went to homecoming. Nobody recognized me. Nobody knew who I was. People that I spent time with and people that I hung around, nobody recognized me. It does take a toll on you. Every day is a mental struggle for me with vitiligo. I can sit and I can laugh at some jokes. But there are some days I don’t want to hear a joke about it. I don’t want you to joke about my skin. I don’t want you to pick fun at it. There are some days I just want to crawl underneath the blanket and dream about what my skin used to be. It is a journey, and it is one that I’m going to have to continuously go on. Imagine being 44 years old and your skin changes.
Heather Woolery-Lloyd, MD: Your condition was so rapidly progressing, you didn’t have any time to even catch up. Your feelings didn’t have any time to catch up with your skin. That’s what’s so challenging. I can tell that you have a great attitude, and I love that you are trying to move forward with this. I can see how overwhelming this diagnosis is. One thing I want to tell you is that it’s OK to feel upset. It’s OK to feel angry. You’re probably a little bit angry; a little bit “Why did this happen to me?” And I always say to my patients, it’s OK because this is how you look and even though we try not to focus on the outside, it really does affect many aspects of your life.
Tarasha: It took a toll. My mental health didn’t have time enough to catch up with my physical. And my mental is still trying to catch up with my physical, because my physical is constantly changing. So, if it’s a new piece of pigment that pops up and then it’s gone the next day, I missed that little piece of pigment. But it does take a toll on you; you have to prepare. If I had anything to say to anyone, especially someone in my age range, it’s find a psychiatrist or psychologist because you’re going to need them. You’re going to need them, and I didn’t do that. You can’t walk this journey with just a dermatologist. You are going need a team of people, doctors, family, friends that are going to help you. It’s going to be a constant mental struggle for you, and if you don’t wrap yourself around that, it can break you.
Heather Woolery-Lloyd, MD: I wanted to talk a little bit about seeking help, because this is not easy. It is a struggle, and there are so many support systems that are available that can help you through this journey. You were talking about your friends who ask, “What happened?” instead of, “How are you?”—that feels like a stab to your heart. When someone is newly diagnosed, how can people be supportive?
Tarasha: For friends and family, just be there and listen. I’ve had several mental breakdowns with it. They have gotten easier. In the beginning it was really hard. I went through depression with it, and the one thing I would say is just be a supporter of your person. If they tell you that they don’t want to joke about it, don’t make a joke about it. Follow their lead; don’t just go off on your own agenda, saying whatever you want to say. Follow that person’s lead because you never know what day of the week could be the day that they just don’t want to deal with vitiligo, even though they have to. They don’t want to be reminded of it.
When I was diagnosed, I had just received a promotion at my job, so I had to go back on campus when everything started opening, I had to go back to my job. I had to show my face to people. The scariest part is reintroducing myself to people, to society. Having a great support system of people is the best thing anyone could possibly do. If you find a psychiatrist or a psychologist who deals with disorders, I think those would be the best doctors to go speak with because although it’s a skin condition, it’s also a disorder at the same time for the patient. Find somebody to speak with who deals with a disorder because they might have more insight on ways for you to combat some of the mental things that are going on vs just someone who is just going to sit there and listen to what you have to say.
Heather Woolery-Lloyd, MD: I am very fortunate that I work in a university setting. So, there are specialists within specialists within specialists. If you’re fortunate enough to live in an environment in a city where there is a large university hospital, they are usually psychiatrists or therapists who specialize in skin conditions. There is a dermatologist who specializes in the impact of how skin conditions affect our mental health. If you have lived a very unique experience, it would be helpful if someone who was taking care of you knew about that condition.
Transcript edited for clarity