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Losing Your Hair and Confidence

Two women share how their mental well-being was hit hard by scalp psoriasis, and how volunteering helped them to gain back their confidence.  

Depending on where your psoriasis is, it might be easy to hide the disease from the outside world. Patches on your legs and arms can be concealed with your outfit. But what if your psoriasis is on your scalp? How do you hide the loss of hair?

For two National Psoriasis Foundation (NPF) volunteers, hiding their psoriasis from the world with strategic clothing choices was not possible. It is not so easy to conceal that your hair is falling out or gone – especially if it was there just the day before.

“It was horrifying,” says Tami Seretti of Pittsburgh, Pennsylvania, who discovered she had psoriasis when she woke up to clumps of hair on her pillow in 1996. “I tried to hide it by staying home, but that doesn’t work. You have to still live your life.”

While Ayesha Patrick of Edison, New Jersey, has lived with psoriasis since she was a child, the alopecia, or loss of hair, that comes with her scalp flare-ups is no easier for her. “When it got bad, all I wanted to do was hide in my room with the covers over me. I just didn’t want people to see or know what was going on with me,” she says.

Both women share in the emotional turmoil that comes with losing their hair and the challenge that comes with finding a treatment that works, only to have that treatment stop working and lose your hair once again. 

Seretti says when she decided to reengage with the world after her first hair loss experience, she was constantly stopped by strangers asking about her condition, due to her bald head and the beanies and turbans she wore. “I would go to the store, and people would ask me if I was in recovery from cancer,” she says. “I would be like, ‘No, it’s just my psoriasis.’”

She felt that she trivialized her psoriasis, especially when compared with cancer, which led to feelings of guilt and shame.

For Patrick, her choice of wearing wigs to cover her hair loss (which has turned into a love for wigs) helped to prevent awkward interactions like the ones Seretti experienced. However, she felt her confidence in hair styling took a hit. “I would feel very embarrassed when I was doing someone else’s hair when [I was] wearing a wig, and it would make me feel sad that I didn’t have my usual thick, long hair,” says Patrick.

Being a mom also brought on additional heartache. Patrick says it has been hard for both her and her 12-year-old daughter, and she has tried to hide her hair loss as best she can. But when she is not wearing a wig, and her daughter can see how her scalp looks, it is hard to explain to her what psoriasis is. “One day she asked, ‘Is this going to happen to me?’ And I literally broke down,” says Patrick.

Today, Patrick and Seretti are in a much better physical and mental state after finding treatments that have given them back their hair. But they also know that what works today might not work tomorrow, and their hair (and confidence) could once again be challenged. Both credit friends and family for supporting them in living their normal lives when it would be a lot easier to lock themselves away from the world. And both have also found that it helps to bring occasional levity to the disease.

Seretti recounts one example: “My husband shaves his head. I used to laugh at him all the time because he’d be sitting there with a hat on when the air conditioner was on. I’m like, ‘What are you doing?’ My hair falls out, and all of a sudden, I get it.”

Family and friends have not been the only emotional support lines. Both Seretti and Patrick point to their involvement as NPF volunteers as extremely valuable to their personal well-being.

Patrick says she got involved with NPF because she did not see a lot of African Americans talking about psoriasis. Becoming a Psoriasis One to One mentor was a chance for her to find and engage with others with whom she could share and learn.

Seretti’s efforts with NPF advocacy have been incredibly rewarding – and her scalp psoriasis has become a strong asset when she is talking with policymakers. “When I took part in NPF’s Capitol Hill Day, I found it to be very effective to tell my story when I meet with lawmakers and I have no hair,” says Seretti. “That makes a strong statement.”

Both Patrick and Seretti plan to continue their generous donations of time to NPF and to be examples that it is possible to survive the negative emotional toll of hair loss. “Even when it’s hard, stay positive, keep your head up, and know that there are others out there that know what you’re going through,” says Patrick.

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