Is vitiligo a disease, condition, or disorder? The answer is all of the above. Yet how we talk about vitiligo matters – both psychologically as individuals and more holistically as an industry.
In the past year, conversations around which words we use to describe vitiligo have become more prevalent. Starting on social media and in doctor’s offices around the country, the conversation finally reached the Vitiligo International Symposium in November 2018, as a panel of leading vitiligo dermatologists, patients, and pharmaceutical representatives discussed the topic.
Disease, condition, or disorder – what’s the difference?
First, let’s break down the terminology. According to the American Medical Association, a condition “indicates a state of health, whether well or ill;” a disorder “denotes a condition characterized by functional impairment without structural change;” and a disease “denotes a condition characterized by functional impairment, structural change, and the presence of specific signs and symptoms.” The difference, says the association, depends on the emphasis on functional change, structural change, signs and symptoms and, to some extent, the gravity the author or speaker intends to convey.
So, what’s the definition of vitiligo? According to Mayo Clinic, vitiligo is a “disease that causes the loss of skin color” and “occurs when pigment-producing cells (melanocytes) die or stop producing melanin – the pigment that gives your skin, hair, and eyes color.” The clinic also shares that “vitiligo occurs when the cells that produce melanin die or stop functioning.” The National Institute of Health states that “vitiligo is generally considered to be an autoimmune disorder” because “the immune system appears to attack the pigment cells (melanocytes) in the skin.” The NIH also notes that as long as vitiligo patients do not have other autoimmune conditions, “vitiligo does not affect general health or physical functioning.”
Let’s review. Does vitiligo indicate a state of health? Yes. It indicates the situation in which a patient is losing skin color due to malfunctioning skin cells. That makes vitiligo a condition. Does vitiligo have functional impairment? The body is attacking its cells – a functional impairment. That makes vitiligo a disorder. Does vitiligo result in structural change and have signs and symptoms? The pigment cells are dying – a structural change. As a result, white spots appear on the skin – a sign or symptom. That makes vitiligo a disease.
So yes, vitiligo is a disease, condition and a disorder.
The division between labels
The “big divide” in labels is whether or not vitiligo is a disease. Advocates, dermatologists, scientists, and researchers stress the importance of reinforcing vitiligo as a disease and illustrating the suffering of vitiligo patients in order to raise funding for research for better treatments and, ultimately, a cure. In a culture that is increasingly accepting vitiligo as something beautiful, these people are reminding the world that vitiligo is still a disease with patients who want a cure.
However, some in the vitiligo community don’t believe vitiligo is a disease – rather solely a condition or disorder. In fact, they have a problem with vitiligo being called a disease. One argument behind this perspective is the Labeling Theory, which says that people come to identify and behave in ways that reflect how others label them. Applying the same theory to self-perceptions, you could argue that the negative connotation of the word “disease” could negatively impact your sense of self. “Condition,” which could have a less severe connotation, could be an easier term to accept as you cope mentally and emotionally. Whereas a disease might seem disruptive and serious, a condition can be perceived as less invasive and threatening.
A second argument against “disease” is that the term implies you are physically unwell. As the NIH stated, as long as vitiligo patients do not have other autoimmune conditions, “vitiligo does not affect general health or physical functioning.” Aside from screening for other diseases and wearing a little extra sunscreen, vitiligo patients are not suffering physically – and that’s great news. So, as it turns out, you can both have a disease and be “well.” In fact, if vitiligo patients do not wish to seek treatment for re-pigmentation, there is often nothing more that needs to be done.
How we talk about vitiligo matters
In short, how we talk about vitiligo does matter – both for yourself personally and for the industry as a whole. Whether you call vitiligo a disease, condition, or disorder, your description is accurate and science will back you on that. Those at the forefront of vitiligo treatments and research will continue to call vitiligo a “disease” to help raise awareness and ultimately find a cure. Those who find “disease” to be an offensive term for vitiligo will continue to call it a condition or disorder.
How you choose to describe vitiligo is up to you. There is no right or wrong answer, only what is best for you personally. However, it’s important to recognize that both definitions and perspectives exist for good reasons and are founded in science. The best thing we can do is bring respect and understanding to this conversation and know that intentions behind language are often steeped in purpose – whether personal or global.
How do you describe vitiligo and why is it important to you?
Erika Page is the Founder and Editor of Living Dappled. After getting vitiligo at the age of seven, she lost 100% of her pigment to the condition and today lives with universal vitiligo.