When she was in middle school, Alyson Wren Tharp drew away from her peers rather than explain her sometimes-visible scalp psoriasis.
“Everyone’s trying to figure out who they are at that age. So, I was trying to figure myself out and trying to figure out what this new thing was I had,” said 18-year-old Tharp, who was diagnosed with psoriasis at age 11.
She wasn’t exactly teased, she said, although she was surprised by the strong reactions from some of her friends.
“Some were really turned off by it, but it was more me alienating myself because I felt different,” she said. “I didn’t want to have to say, ‘Yes, I have this,’ and then explain what it is.”
She found a more accepting environment in high school. Tharp came to see her condition as an educational tool and now spreads the word as a National Psoriasis Foundation Youth Ambassador.
However, telling her first serious boyfriend about the condition was particularly stressful.
“I was worried that I might get treated differently or that he wouldn’t find me attractive,” Tharp said. “Psoriasis is a lot more of a burden than people expect it to be.”
Her boyfriend was “totally supportive” and, for Tharp, it was a major moment.
“That was when I realized I’m not like an alien because I have psoriasis, but it took me a long time to get where I am now,” she admitted.
Children worry about being different, and how they come to terms with their disease can change over time, said Dr. Becky Lois, attending clinical psychologist and assistant professor of psychiatry and pediatrics at the Children’s Hospital at Montefiore in the Bronx, New York.
For instance, things may go smoothly when a child is younger and has a circle of accepting friends, but that can change dramatically as he or she enters higher grades with shifting social expectations and behavior, Lois said.
“There are days and times when parents and kids may find it’s easier and days and times when it’s not,” she said. “I think it’s key to recognize this is a process that’s going to be ever-changing and that picking up support is an important way to cope with that roller coaster.”
Challenges in the classroom
Psoriasis and psoriatic arthritis demand a lot. Tharp said she isn’t ready for biologics, so she deals with daily applications of messy topicals. Andy Moy, 18, who was diagnosed with psoriasis and psoriatic arthritis before he was 6, needs to take breaks from writing test answers because severe arthritis stiffens and pains his hands.
Potential social isolation, teasing or bullying, and appearing different by needing special accommodations at school, can make it difficult for children to cope. And that stress can cause psoriatic flares, said Dr. Amy Paller, professor and chair of dermatology and professor of pediatrics at Northwestern University in Chicago.
To deal with that stress, find allies and information by teaming up with other children and parents going through the same things, said Paller, who recommends getting involved in the NPF community.
“Having a place where you can talk openly about symptoms and what you’re going through with people who understand is big from an adjustment standpoint,” said Lois. “Kids also learn specific, concrete coping skills.”
Parents should meet with teachers and school staff at the start of each school year to educate them about their child’s condition and any special needs.
“For younger kids especially, it can be helpful to identify a ‘home base person,’ a guidance counselor or teacher, for example, who your child feels connected to and who understands their condition,” said Lois.
Having that ally can also be helpful when dealing with curious classmates. “They want to know what that rash is and whether they can catch it,” she said.
Whether children are ready to explain it on their own depends on how quickly they’re developing mentally.
“Children need sufficient comprehension to be able to do this,” Lois said. “School-age is a minimum, but for some, this may mean first grade, for others, fourth or fifth grade.”
Lois advises preparing younger children by asking them what they’d say to a schoolmate or friend who asked about their condition.
“See what your kid says and help them adjust as needed,” she said. “Children really do absorb information and are able to explain it in a way that is developmentally appropriate as opposed to adults putting the words in their mouths.”
Teens typically need less guidance and usually want to make their own decisions about when and how to tell other kids, said Lois.
Tharp said that her peers have often asked to see her psoriasis.
“It can be kind of uncomfortable, but I understand how they might be curious,” she said. “Usually, I don’t get a negative reaction.”
Dealing with teasing and bullying
Moy experienced teasing in elementary school, when psoriasis basically covered him head to toe, and the school was quick to intervene. In middle school, however, things got more difficult.
“Older kids would say stuff to me in the hall, but I couldn’t do much about it because I didn’t know their names,” he said.
By eighth grade, the teasing was mostly behind him. His advice?
“Distance yourself from bullies and hang out with friends who like you for who you are,” he said. “Things will die out eventually, but if it gets to a point where it’s bad, talk to someone.”
When parents choose to intervene with bullies, the matter should be handled delicately, Lois advised.
“If it seems to the bully that a kid has ‘told’ on them, it can make bullying worse,” she said.
Rather, she suggests parents give school staff specifics and ask them to watch closely so they can catch offenders in the act to avoid the child being labeled a snitch. And monitor the child’s state of mind.
“Kids with psoriasis and psoriatic arthritis have an increased risk for depression,” said Paller. “It’s important to be aware of signs of problems that require psychological help.”
Watch for major behavioral changes that could indicate a child is being bullied, said Lois.
“Look for social withdrawal, for example, in kids who used to be very interested in having play dates or hanging out with friends,” she said. “Similarly, shifts in mood — particularly a lot more sadness, tearfulness or irritability — can be trouble signs. Teens in particular often mask sadness and depression as irritability.”
Making special accommodations
For kids with disabling conditions, the Americans with Disabilities Act (ADA) requires special accommodations at school to help them succeed academically. In addition to having extra time during written tests, for example, Moy also had all of his high school classes scheduled on the first floor.
Although the ADA requires it, setting up and adjusting these accommodations isn’t always an easy process, said his mother, Jaime Moy.
“Everything takes a lot of time to work out, so if things aren’t going as expected, get in touch right away,” she suggested.
It’s also important to ask the child how she or he feels about particular accommodations, said Lois.
“The child may not want to stand out more by getting any additional time or other accommodations,” she said.
“Whenever possible, get feedback from the child and provide accommodation in a way the child will accept and that doesn’t feel socially scarring.”
For Moy, this meant that, while he got additional writing time, it was done discreetly so his peers would be less likely to notice.
At publication time, Moy was getting ready to leave for college, where he’s already checked into special accommodations.
“There’s one where they’ll come pick you up so you don’t have walk across campus,” he said. “I don’t think I’ll be using it that much, but if we get a bad winter or something, I wouldn’t hesitate to call.”
Tips for college-bound kids
Leaving home for college is a huge transition in any young person’s life. Students with psoriasis and psoriatic arthritis in particular must find new ways to live with their disease without parental guidance.
Here are three ideas to help make that transition as smooth as possible:
1. Empower them at a young age. Ideally, you should start encouraging children to take ownership of their care in the pre-adolescent years, said Dr. Amy Paller, professor and chair of dermatology and professor of pediatrics at Northwestern University in Chicago.
“They could start by applying moisturizer and later applying topicals or giving themselves shots,” she advised. “This gives children a sense of control and sets up the concept that they’re developing into a person who can take care of themselves.”
2. Be prepared. Stress, a new diet, a change in climate and a new routine can prompt flares. Have a plan in place for connecting them with college health services and refilling medications. Investigate the campus and dorms to understand any special accommodations that may be needed.
3. Get help. Most colleges offer a raft of resources for students with special needs. This ranges from academic help, such as tutoring and guided study groups, as well as writing and math centers and academic advising, to counseling and campus transportation. Encourage your child to take advantage of these as needed.
Driving discovery, creating community
For more than 50 years, we’ve been driving efforts to cure psoriatic disease and improve the lives of those affected. But there’s still plenty to do! Learn how you can help our advocacy team shape the laws and policies that affect people with psoriasis and psoriatic arthritis – in your state and across the country. Help us raise funds to support research by joining Team NPF, where you can walk, run, cycle, play bingo or create your own fundraising event. If you or someone you love needs free, personalized support for living a healthier life with psoriatic disease, contact our Patient Navigation Center. And keep the National Psoriasis Foundation going strong by making a donation today. Together, we will find a cure.