Coming of age with psoriasis

| Melissa Leeolou

I have been learning to cope with psoriasis for as long as I can remember. 

The first patches appeared on my skin around my first birthday. Growing up, I was the object of name-calling and stares. I tried to ignore the negative attention. I reminded myself that my condition neither defined nor controlled me. True as these affirmations were, psoriasis did create very real struggles for me. Acknowledging and accepting the dual role that psoriasis played in my life – a source of pain, and yet a very small part of who I am – was an essential part of my journey towards self-acceptance in my early years. 

As a young adult, another part of that journey has been focused on finding ways to introduce people to psoriasis. I want to reassure people that I’m not contagious, but still explain that my disease is often hard to live with. It’s a difficult balance to strike.

There’s also a vulnerability that comes with revealing one’s psoriasis to others. Often, people with psoriasis are comfortable with their condition so long as it doesn’t show. I have a friend who declined to attend a work event to avoid a pool party with his colleagues. Though he knew he could explain his psoriasis, he was still reluctant to actually expose it. 

Is it wrong for me to conceal my psoriasis when I feel like it? Although my message is one of self-acceptance, in reality I struggle to embrace my skin 100 percent of the time. (I’m around 80 percent covered when I’m not treating.) Sometimes I bare my psoriasis proudly, but there are days when I prefer to hide it. I know that my worth as a human being isn’t tied to having clear skin – but I don’t want it to be my biggest focal point, either. 

Far from being black and white, life with psoriasis is about giving myself permission to constantly redefine what makes me feel confident. 

When people ask me when is the right time to start a conversation about psoriasis, I say that it’s different for everyone and largely depends on your comfort level. If you’re not sure where to start, try speaking with someone who has psoriasis. Ask others how they did it. Tell them about your concerns. Learn from their experiences. 

Though there will always be those who are unwilling or unable to see past the condition of your skin, it’s important to give people a chance to learn and respond. People will often surprise you with their understanding and compassion. If you’re faced with an unkind response, remind yourself that anyone who treats others differently for having psoriasis probably isn’t worth having in your life, whether you have the disease or not. 

Psoriasis and dating

I mentioned earlier that life with psoriasis is far from being black and white. Beneath the victories of self-acceptance lies the emotional toll. It’s no surprise that psoriasis is associated with depression. For some, it can be challenging to engage in social activities, making dating extremely difficult. 

For a long time, I would only date people with whom I had mutual friends. My hope was that they would know about my psoriasis ahead of time and spare me the awkward conversation. 

When I finally started dating people who didn’t already know about my psoriasis, I’d mention it casually pretty early on, just to gauge their reaction. When they wanted to know more, I’d share. I’d let them guide the conversation, but I’d talk about it openly. 

I also learned to laugh a lot. One person I was dating was nervous asking questions about it. He didn’t want to offend me. I took his hand and placed it on a psoriasis spot. I told him that yes, it feels different, but you won’t hurt me by touching it. It was bold and strange, but it put him at ease and moments later we were laughing. It reminded me that neither my skin nor my ego had to be fragile. 

Looking ahead

My generation, the millennials, is notorious for being indecisive. When it comes to coping with psoriasis, that might just be my best recommendation. After 25 years, I’m still trying to be positive and upbeat while acknowledging the reality of bullying and the stigma. 

In these moments, I find solace in the gray area: I’m confident and resilient, but sometimes I get hurt, too. 

It might feel like a tug of war, but most days, I’m right where I want to be. 

Our Patient Navigators are here to offer emotional support and more. Contact us if you would like to speak with someone about your psoriasis.  

Photo: Melissa Leeolou at the 2017 National Volunteer Conference in Chicago. Credit: Bill Healy

Driving Discovery, Creating Community

This year, we’re celebrating 50 years of driving efforts to cure psoriatic disease and improve the lives of those affected. See how far we’ve come with this timeline of NPF’s history. But there’s still plenty to do, and we can’t do it without you! Learn how you can help our advocacy team shape the laws and policies that affect people with psoriasis and psoriatic arthritis – in your state and across the country. Help us raise funding to promote research into better treatments and a cure by joining Team NPF, where you can walk, run, cycle, play bingo or even create your own DIY event. Contact our Patient Navigation Center for free, personalized support for living a healthier life with psoriatic disease. And keep the National Psoriasis Foundation going strong by making a donation today! Together, we will find a cure.

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