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 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 your 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.