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Why Advocacy Is Important When Your Illness Is 'Invisible'

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young me with visible vitiligo and invisible OCD

Of all the rare ailments in the world, some are easily visible and apparent to the world without a choice, while others are hidden from the eyes and perfectly secret.

One such visible condition is vitiligo. Michael Jackson had it, the famous model Winnie Harlow has it, and I have it. Of course, this easy visibility leads to questions. “What happened to your hands?” “What are those spots?” “Were you in a fire?” Though these questions were sometimes annoying as a kid, as an adult I truthfully don’t mind.

This inevitable openness leads to noticing others with vitiligo. Although only about 1 percent of the population has vitiligo, we can easily spot each other. It sometimes even leads to conversations like “Do you have vitiligo?” “Yes, do you?” “Yes, me too!” The conversations last only a moment, but they have immeasurable importance. For a few seconds we get to feel like someone else understands.

But, I also have OCD, or obsessive-compulsive disorder. In certain ways, my OCD is similar to my vitiligo. I have had it since I was very young. About 1 percent of the population has OCD. And while there are ways to conceal or control both, the underlying disorders will be there for the rest of my life.

Statistically speaking, I know people with OCD are out there. OCD is just as prevalent as vitiligo. For every person I spot with vitiligo, there should be a person out there with OCD. Yet, because the symptoms of OCD aren’t written so visibly on our skin, we don’t know that we are passing each other. We don’t get to have that “me too!” moment that is so emotionally valuable.

OCD is known as “the secret illness.” Usually, the only way for others to know we are struggling with OCD is to disclose it verbally. We have to take that big step to say something. This is not always easy with family and friends, and it certainly isn’t always easy with strangers you pass at the store or on the bus. So unfortunately, the secret usually remains a secret. We don’t get to know how many fellow warriors with OCD we have passed in a day.


So this is why I speak so openly about OCD, and mental health in general. I remember what it was like to not know anyone else with OCD and to feel alone. Sure, you may not be able to spot me on the street unless it’s a day I’m wearing my International OCD Foundation shirt or #OCDvocate bracelet. But, maybe if people read about others who truly understand what they’re going through, they can feel less isolated. They can know they’re part of a group.

We are out there. I am out there. You are not alone.


Originally published: September 16, 2016
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