In honor of World Psoriasis Day, I had a once-in-a-lifetime opportunity to talk with the incredible Cyndi Lauper about her new song, Hope, which was inspired by the conversations that she’s having with people in the psoriasis community and by her own journey with the disease. The song title so purely captures exactly that feeling that we all have. But more than that, her song is a unifying anthem that beautifully connects and inspires the millions of people around the world living with psoriasis. She said her inspiration for the song came from “All of these people. It was so moving and kind of heartbreaking when they finally found something that worked. But the one thing that I got from them is that they didn’t give up. They never gave up. so I thought that was a good thing to remember. And that it gave me a lot of hope and it gives a lot of people hope.”
Music has the power to evoke strong emotions and transform experiences and simple moments, so I felt an incredible gratitude towards Cyndi who created such a special tribute to a community that has impacted my life in such a positive way. Having someone with such a powerful voice in this community speaking with us and so beautifully translating our day to day feelings is just too amazing to put into words. Through her journey with the See Me campaign, Cyndi met Todd Bello of Overcoming Psoriasis and he said that it was a game changer with Cyndi talking about psoriasis and that she was going to speak for him and for us. For her it changed everything, “because 1.) I felt a responsibility to do it right and 2.) I wanted to give people hope so they could help themselves.”
Even over the phone, her energy radiated with confidence and power. I was prepared with a few questions, but from the start of the call it was more conversational and about sharing stories. There’s an instant connection when you meet or talk to someone else with psoriasis – you both just get it. You understand their struggles with simple sounding things. Getting out of the back seat of a taxi should be relatively easy, right? But not when you leave your skin in there, like Cyndi did once! “Oh please, the creams! Come on! I put so much cream on that I got out of a cab one time and my skin came off on the cab. That’s how thin my skin got. I have no idea it was making my skin that thin. My skin is still healing.” Many of us with psoriasis, struggle with the decision of what to wear to work and trying to find the energy to power through the day when you have a psoriasis flare. Cyndi has those same struggles, but for her it was about designing costumes to cover her psoriasis on stage and in the public eye and performing and traveling all over the world with a crazy tour schedule.
We swapped stories of the ridiculous treatments we’ve tried, including rubber suits and rolls of static cling that we wore to force those horrible, smelly topicals creams to stay on and hope they do their job. When I asked her what was the most “out there” treatment she’s ever tried, she told me
“I went to an alternative doctor once while I was trying to do a tour. I had this idea that I would run through the arena like a boxer, then climb up the stairs and I’d do this whole number. Meanwhile for my psoriasis, I had been making teas to soak my feet in at night and I made a tea bath to take a bath during the day, so basically I was detoxing. I was detoxing while I was touring and that was the craziest thing I did because at one point I got global amnesia. My body went into shock because I was doing this and somewhere around the 5th or 6th song I forgot what I was doing.… I don’t know how I got through. I heard it was really good!”
Cyndi is unapologetically herself and a powerhouse advocate for the psoriasis community.
For so long, she’s covered up her skin and battled through her sickness while creating such an incredible life and career for herself.
She said “I got better doing this work. Before, I didn’t have enough information. But there is information and you need to research. Go on this webpage SEEMETOKNOWME to hear everybody’s stories. Go to the National Psoriasis Foundation and hear what they have to say. Find the practitioners that actually study psoriasis, not cosmetology. And not that I’m knocking it because, honey cosmetology is everything when you get older! When you’re sick, you feel powerless but knowledge is power.”