This was also published on The Mighty: Why Advocacy Is Important When Your Illness is ‘Invisible’
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. Vitiligo is an autoimmune condition where your immune system mistakenly attacks your own skin cells, and as a result you gradually lose the pigment in your skin. I have had vitiligo nearly my whole life, so I rarely give it a second thought. The oddly shaped white spots are there, have always been there, and will always be there. I’m used to 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.
Visibility has an important perk. The perk is such inevitable openness also leads to noticing others with vitiligo. Although only about 1-2% 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.
While I rarely mind having vitiligo, another condition has a far greater negative impact on my life. That monster is OCD, or obsessive-compulsive disorder. In a lot of ways, OCD is similar to vitiligo. I have had it since I was very young. About 1-2% 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.
Yet there are two important differences between living with vitiligo and living with OCD. The first is, while vitiligo can be emotionally challenging for some to live with, it isn’t for me. I’ve made peace with my spots. OCD, on the other hand has been incredibly debilitating at times and has often gotten in the way of being able to live my life. The second difference, and it’s a crucial difference, is that we can’t see others around us who also have OCD.
Statistically speaking, I know they are out there. OCD is just as prevalent as vitiligo. For every person I notice 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.
It is with good reason that 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 t-shirt or #OCDvocate bracelet. Yet maybe if you read there are others out there who get it and truly understand what you are going through that can help you feel less isolated and can instead help you feel like you are part of a group.
We are out there. I am out there. You are not alone.