For those who know me personally, you know that I have vitiligo. Vitiligo is an autoimmune disease affecting the skin, where there are patches of depigmentation (the skin appears white or pink). It is sometimes associated with other medical conditions.

I met someone recently and they said that they were curious about my skin. I am used to looks or questions and am happy to educate people about vitiligo, so I didn’t mind. However, I do mind if you’re trying to hawk a multilevel marketing product that will heal it.

Anyway, this person wanted to know the reason for it and if I was well or not (they assumed that my skin appeared that way due to treatment for something else or a burn). All still okay, but honestly, a little intrusive, considering that I hardly knew them. They then went on to suggest that I should introduce myself to others by clarifying that the reason my skin is that way is because of vitiligo, so that they aren’t left wondering.

In the past, I have been told to cover up and wear long sleeves because someone noticed my skin and had asked them (the person telling me to wear long sleeves) about it. This was when I did not have vitiligo on my face yet. I can’t hide it now.

Shame and control

The reason I am writing about this is because:

• I am a mental health practitioner.
• I am also a person who has an autoimmune disease.

In my mind both these reactions (pre-emptively clarifying to others about something they have not asked me about or covering up my skin to avoid such questions) are two sides of the same coin and the coin is “shame and control.” Not mine. It is the shame of the person suggesting it to me, projected onto me. It is also a way to control the situation or even a way to control how I perceive myself (badly or being on the defensive). Not everyone likes it when you accept your vulnerabilities openly. It rubs up against their internalized shame too much.

Perhaps these people had good intentions and wanted to make sure everyone was comfortable. Seriously though, do we expect others with a visible disability that requires them to use a wheelchair, for example, to explain why they’re in a wheelchair when we meet them? Do we ask them to attempt to hide the fact?

The onus is not on me.

The onus is not on me to enter a room and wonder who will be curious about my skin, who will be scared or fearful (it isn’t contagious), who will have superstitions about it (evil eye, being cursed by someone), or who will wonder if I am all right.

I don’t have to shrink or explain myself for the comfort of others. If they are curious, they can just ask me about it. I have found that in most settings, no one has an issue with my skin or really cares for that matter. Honestly, most people are just concerned with their own lives.

Those who do have an issue with it are trying to sell me something (a potion or a prayer) that requires me to be in the position of feeling bad about myself.

Not happening.

Reshma Stanislaus is a lifestyle medicine physician.