Open communication with children who have psoriasis or psoriatic arthritis should begin at an early age. How much is said and explained by parents and other family who play a role in your child’s care should depend on her age, ability to understand the disease, and the ways in which it affects her medically, socially and emotionally, explains Kelly M. Cordoro, M.D., professor of dermatology and pediatrics and chief of the Division of Pediatric Dermatology at University of California, San Francisco.
“Preschoolers [ages 3 to 4] are curious about physical differences and will ask pointed questions about them, as well as about abilities and disabilities,” she says. “Kindergartners [ages 5 to 6] are in the process of developing awareness of self-identifying traits, such as their appearance and abilities. At this very active time of observation, children also compare themselves to others. In doing so, they develop opinions and perspectives about themselves that may impact their beliefs, perceptions and interactions.”
In early childhood, it’s crucial for kids to develop a positive sense of personal identity. This influences how accepting (or unaccepting) they will be of themselves and others, Cordoro says.
Building a strong self-image
Children, depending on their age and maturity level, aren’t always able – or willing – to articulate to parents their real feelings about psoriatic disease and its effects on their lives and self-image.
“There is a wide spectrum [of reactions],” says Cordoro. “Some kids cope very well with psoriasis, while for others, visible skin disease, even if minor, may create an enormous social or psychological burden.”
Your child’s behavior can often help clue you in to what’s going on in her head, she says.
“Younger children may act out, show emotion or socially isolate themselves if they have a negative self-opinion, while older children may be better able to express this,” she says. “Many adolescent patients are loathe to share their thoughts and feelings with caregivers. It often comes as a surprise to parents when children express negative self-emotions during a clinic visit in response to directed questions [from the dermatologist].”
It’s critical that you take any concerns about appearance or abilities seriously.
“Psoriasis that may be deemed medically ‘mild’ or ‘limited’ may be severe in terms of emotional health, particularly if it’s visible and can result in a disproportionate impact on children’s self-esteem, body image and relationships,” she says. “When seeing a dermatologist, patients and caregivers should each share their concerns, beliefs and preferences about psoriatic disease. Offering adolescents time alone with the physician may encourage them to share information that’s important in managing their disease and its impact on them.”
Putting psoriatic disease in its place
Parents and caregivers of children and adolescents with psoriatic disease should acknowledge the disease and its impacts, but also take care not to overdramatize it or make it the center of the child’s life, Cordoro says.
“I often remind parents they have a child with psoriasis, rather than psoriasis with a child attached,” she says. “This type of perspective is critical for children to develop a positive sense of identity and be comfortable communicating about their psoriatic disease to parents and physicians.”
Let your child do as much talking during medical visits as their abilities, age and preference allow.
“Often caregivers rush to answer every question, thus the child feels disempowered and inhibited,” Cordoro says. “It’s important for parents to engage children [as age-appropriate] in medical decisions. This empowers them and gives them a voice as it relates to their own body. There is no ‘one-size-fits-all’ approach to communication because so many factors are at play, but the importance of allowing the child a say and some independence with treatment choices and other aspects of care builds trust and opens communications.”
Request a booklet to help you care for your child
The more you and your kids understand their disease, the better you can support them. Download this free booklet and share it with other family members. It includes information on psoriatic disease, advice for talking about the disease and self-care tips so you can feel your best.
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.