Years ago, I took my young children to the swim club every day during the summer months. Charlie, one of the teens at the pool, who obviously loved children, took the time to organize a game of ball or Frisbee in the grass field next to the pool. Other days he would sit and play cards with a group of children. They all adored him and he seemed to greatly enjoy the time he spent with them. Although they often asked him to swim, he usually refused. On the rare occasions he did go in the pool, he normally kept his t-shirt on, saying he burned easily.
One day Charlie took his shirt off. On his back were psoriasis plaques. Because I had a family member with psoriasis, it didn’t bother me or my children. But other mothers were taken aback and after that day they more often than not found reasons why their children couldn’t play ball or swim with him. Charlie didn’t mind so much the children’s questions - they were curious - and he explained the disease to them. But the reaction from the parents hurt him deeply. He was devastated, you could see the pain in his eyes, and as the summer wore on, we saw him less and less until he simply stopped coming to the pool.
Charlie isn’t alone in feeling ashamed and isolated because of psoriasis. According to a study completed in 2012, the majority of participants–all had psoriasis–felt stigmatized by psoriasis. They stated that people stared at their skin and that they dealt with feelings of guilt and shame because of their psoriasis. Although psoriasis is an autoimmune disorder and is not contagious, people are uncomfortable with how it looks. Those with psoriasis often put up with being asked to leave restaurants, refused service by hairdressers and getting turned away at swimming pools. They put up with stares, gasps and rude comments.
We try to teach our children that everyone is beautiful and everyone deserves respect. But, in reality, as a society, we place beauty and appearance high on the list of important characteristics in a person. Psoriasis and other skin diseases cause fear - "What is wrong with him?" or "Will I catch it?" The fear is caused by ignorance, lack of understanding or lack of desire to understand.
The difficulty with ignoring the ignorance
It’s easy for those of us without psoriasis to say, "Ignore it, you are a good person. The psoriasis doesn’t define who you are and the people that don’t understand aren’t worth your time. Simply ignore them." But it is much harder to do so. Imagine meeting someone and reaching out to shake their hand, only to have them pull back and drop their outstretched hand when they see psoriasis plaques on your arm. As much as you want to ignore it and as much as you can tell yourself that it doesn’t matter, it hurts and it hurts deeply.
It isn’t surprising that people with psoriasis often have low self-esteem and confidence levels. This can affect their relationships, social lives and even job opportunities. Besides living with the itch, pain and other symptoms of psoriasis, they must live with the stigma that comes along with it.
Telling someone with psoriasis to "simply ignore it," isn’t realistic because even if you do ignore it during that moment, the pain stays with you. Many people instead choose to hide their psoriasis, wearing long-sleeves, high collars and long pants to cover affected areas. Being hot is easier to deal with than being rejected.
What you can do
Fighting people’s long-held beliefs is never easy. And not everyone feels comfortable speaking up or confronting another person. Each person with psoriasis must decide what feels most comfortable and work to fight the stigma surrounding psoriasis in his or her own way. Here are some suggestions:
Learn everything you can about psoriasis. By understanding the disease, you can better understand how it affects you and how you can properly manage it. You also have more knowledge to share with others.
When faced with the stigma, use it as an opportunity to educate the other person. The stigma surrounding psoriasis isn’t going to go away overnight. It isn’t going to disappear because you explain psoriasis to one person. But, it might make that person better understand, who in turn might educate someone else. Have a short explanation - one or two sentences - ready, state what psoriasis is and emphasize it isn’t contagious. Use creative ways to explain psoriasis. Keep business cards with website addresses that explain psoriasis for people to look for additional information. Focus on those people who are receptive to your explanation and don’t worry about those who choose to hold tightly to their ignorance.
Share your diagnosis with family and friends. You don’t need to announce your diagnosis to everyone. Instead choose a few people you trust and let them know about your psoriasis. It helps to have some people in your life who understand, accept you and love you - no matter what. It is these people who will help you through the difficult times and make you feel less isolated and alone.
Find support. Look for an online or in-person support group. Sharing stories with others who have been through similar situations and can offer a different perspective can help you better deal with future situations.
Eileen Bailey is a freelance health writer. She is the author of What Went Right: Reframe Your Thinking for a Happier Now, Idiot’s Guide to Adult ADHD, Idiot’s Guide to Cognitive Behavioral Therapy, Essential Guide to Overcoming Obsessive Love, and Essential Guide to Asperger’s Syndrome. She can be found on Twitter @eileenmbailey and on Facebook at eileenmbailey.