The story of an Indian doctor with vitiligo

“Alright, sir, that’s the plan, and we will take good care of you.   What questions do you have for me?” I asked after discussing the patient’s condition and hospital course.  The patient looked satisfied and nodded as if he understood the plan, and asked: “Well, one question, where are you from?”  I immediately let out an internal sigh, knowing where this conversation was going and replied, “Well sir, I was born in Georgia, and I’m Indian.”  With a puzzled and questioning look, he looked back at me and said, “But, you don’t look Indian!”  I gazed back in his eyes, and awkwardly smiled and said: “I get that a lot, but I’m Indian.”   While smiling, he eagerly replied, “Your skin is just so light-colored and fair …”  My body clenches, and muscles tighten up as I feel awkward, and I pivot the conversation and walk out saying, “We will take good care of you, and I will see you tomorrow.”

Change is on the horizon in the country, and it’s a one that most of us have waited for as we strive for equality and to embrace the diversity among all of us.  The antiracism movements, including Black Lives Matter, are so integral to the country moving forward as we must move past reacting to one’s skin color. My story is not about experiencing racism, but it is about facing reactions to my skin color.   As we approach World Vitiligo Day, I share this story to first and foremost advocate for patients with vitiligo.   And second, as we empower society and the next generation of human beings with goals of acceptance and change, I want to apply my story as one example to teach ourselves not to react to skin color.

In this day in age, we must acknowledge and realize that the first feature noticed in any human encounter is the color of one’s skin.  After noticing one’s skin color, the actual reaction is the critical behavior and next step.  Reactions are truly what matter, and come from a deep, inner, subconscious space.  Often they are deliberate, and sometimes they are passive.   In fact, the reactions we act upon are often just a result of simply seeing something “different” or “unexpected” on a human body.

At the age of 9, I was diagnosed with vitiligo. Vitiligo takes an individual on a journey where they watch their skin become depigmented, and face living with two skin colors as the depigmentation progresses.   At times, the depigmentation can be halted with medical treatment (which continues to be innovative and groundbreaking), and there are other times when it over-powers the skin organ irreversibly despite intervention.  My story is the latter, and I first-hand have witnessed my skin transform from brown to white over a period of 20 years from small speckled dots to large white patches, and ultimate complete depigmentation.   While vitiligo affects my skin, the favorable reality is that I can still live a normal life.  But, carrying two skin colors on one body leads to reactions from people like staring, gazing, questioning, pointing a white patch out as if they’re the first ones to notice it, and more inquiring behaviors.  It can be completely ostracizing and isolating.

However, with the proper social support from loving and accepting family and friends, it can be very comfortable to live with vitiligo.  I am blessed to have supportive parents, a protective brother (who is now a practicing dermatologist with expertise in vitiligo), and a loving wife now of 7 years.  With this support, my result has steadily been acceptance.  Over the years, I learned to accept that my skin was different, and at many times, it was something on my body I did not even really think about.   I essentially lived my life while depigmentation was happening.

Growing up, my family sheltered and protected me with everything related to vitiligo.  People never really asked me what happened to my skin.  And, if I did get questions, I honestly did not know how to answer them, so I would say “oh, they’re just sunburn scars” or some version of that story, and moved on.  Thinking back, I probably was too supported and busy to really have an opportunity to be bothered by it.  That, in itself, was a blessing.  I pursued many years of schooling and training to ultimately become a practicing physician.

Now that I’ve been in medicine for many years, I primarily value and cherish the connection with my patients, as I sincerely believe medicine is fundamentally about the human experience.  But, when I hear statements like “you don’t look Indian” from patients, I am constantly reminded each time that I have vitiligo.   Reflecting on how best to answer this question, I ask myself if I should react and explain the skin condition, or just let it go.  The truth is that the majority of the time, I do “let it go” when it comes to discussing my skin condition with patients. I simply don’t want to explain to patients that I have vitiligo.

While I have coached myself to not feel defeated by this question, I do feel vulnerable.  It takes me about 45 seconds to decompress and move forward to the next patient or task after being asked about pertinent or related to vitiligo.  And, further expanding upon my own vulnerability to a patient, in my eyes, would impede my relationship and distract me from their care.   So, my patients do not need to hear about their doctor’s own medical issue after just meeting them for the first time.

I don’t feel that patients treat me any differently with vitiligo, but it brings a deeper question as what patients assume when they see each of us, as health care providers, walk into their room.   If my skin tone were a shade of brown, would they assume I’m Indian and not ask the question?  Or, if my skin tone were black, would they assume I’m African-American?   Would they have a different expectation or reaction of me?   The truth is that the answer to all of these questions may be “yes.”  And, while I don’t like hearing that my patient is perplexed that my skin color does not match their expectation based on my ethnicity, I also don’t assume their reaction is always negative.  The primary negative emotion is that inquisitive questions can make the receiving party feel very vulnerable.  Vulnerability is a problem, as it simply leads to distressing emotions from embarrassment, discomfort, and anxiety.  Ultimately, it can impede any interpersonal relationship, whether old or new, and professional or personal.

We live in a society where injustices, biases, and inequity are plaguing us, ultimately making so many feel vulnerable.   While this is my own story, and a personal one, I hope it delivers a small message about reactions and vulnerability, which really can affect anyone.   When noting a physical feature that is “different” or “unexpected” ranging from skin color, physical disability, or any visible characteristic on someone, it is best to not act upon a reaction, and look past it as there is always more to the person and more to their story.

Dhaval Desai is a hospitalist. 

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