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NPF ambassador Melissa: Just don’t lose hope

Melissa, a 26-year-old former professional ballet dancer, has had psoriasis since her first birthday. Severe psoriasis flare-ups have not stopped Melissa from living life to the fullest, and now for PsoHappy, she shares her story: what it means to live with this chronic condition, and how she got involved in psoriasis advocacy with the National Psoriasis Foundation.

 

The stigma of psoriasis

Living with psoriasis is difficult. First of all, it’s on your skin, so you wear it everywhere you go. With many other diseases, your disease is not the first thing people notice and you can choose to disclose it if you feel comfortable doing so. But with psoriasis, you don’t have that choice at all – and people often respond to it very negatively. When I meet someone new, it’s all they can see about me for a while and that’s the unfair part of the disease. I had psoriasis on my hands for a long time and never felt comfortable shaking hands with people when meeting someone, because I knew they’d be afraid it was contagious.

Psoriasis doesn’t change who you are: even when I had severe flare-ups, I still wanted to be social and go on dates. But I would only date friends of friends – people who I hoped already knew about my disease. One of my best friends told me, “You don’t want to be with anyone who judges you for having psoriasis, whether you have it or not”. I’ve always had the attitude that, if you’re going to judge me for having psoriasis, then you’re not the person I want in my life, even if was completely cured.

In my early years of dancing, I had a lot of partners refusing to dance with me because they didn’t want to touch me. But that motivated me – I wanted to be so good that everyone would dance with me, no matter what my skin looked like. My parents pushed me and never let me use psoriasis as an excuse to give up on myself.

Joining NPF

I joined the National Psoriasis Foundation when I was a teenager, but I started to be more active with them about five years ago. Now, I’m one of the national mentors and a New York community ambassadors.

When I went to my first meeting with the Foundation, I immediately had an incredible bond with the people there, even though only moments before they were total strangers. We’ve lived with the same medical reality and had so much in common. At the NPF, we can talk about everything from our day-to-day problems to our long-term concerns. We give each other advice and solidarity, and it has created a cohesive and loving support group.

I believe people with psoriasis are stronger together because we understand each other. Psoriasis is still really stigmatized – at least here in the US – and I think educating the public and feeling comfortable talking about it is very important.

Psoriasis awareness

For a while I had psoriasis all over my face and even on my eyelids. When I woke up in the morning, I’d put hot compresses all over, so I could open my eyes and move my skin. And that was followed by hours of moisturizing. When people see some of my flare-ups, they have no idea of the struggle and commitment behind it.

At NPF, we know that psoriasis is an autoimmune disease and not just a skin disease – it comes from within. You can do everything in your power to be healthy, but it may still attack your body. That’s an important boundary to break. I want people to know that psoriasis is more than the rash, because the rash is just one symptom of the larger disease.

I believe psoriasis awareness is growing, and I attribute that to several things. One of these might be unique to the US – advertising drugs on television is allowed, and we have a lot of pharmaceutical commercials. Surprisingly, ads help, because people hear more about psoriasis and it makes a difference. Lots of celebrities have talked about having psoriasis, including Kim Kardashian and Cara Delevingne, and that helps people learn about it with fewer negative associations.

Advice for others with psoriasis

My best advice is to be your own advocate, and be proactive in your treatment choice. Find other people with psoriasis to talk to. One of the biggest challenges at the National Psoriasis Foundation is that we know there are at least eight million Americans with psoriasis, but most of them don’t seek support or come to our events. If you’re not comfortable opening up, maybe you can listen to others talking about it. It’s important to find the right resources. If your treatments are not working or if psoriasis is impacting your job, relationships or self-esteem – just don’t lose hope.

 

PsoHappy explores how psoriasis affects happiness and well-being. Make your voice heard by taking our surveys about different aspects of living with psoriasis

 

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