"Mommy, what's wrong with your skin?" asked my 5-year-old son, aghast. There was no hiding the large, red, scaly patches spreading across my arms. Smaller, less angry patches were on my legs and belly, but it was my arms that were resting on the table opposite him, my arms that made his blue eyes widen in concern.
For several years, my son and his little sister have watched me deal with psoriasis on a daily basis, with widely varying results. They have watched me laboriously apply emollient three times a day, and cover up with long sleeves. They have watched my skin grow redder and angrier throughout the cold winter months. They have heard my whoops of joy on vacation, when the sun and heat give my skin a much-needed reprieve. They may have seen me shed desperate tears over this frustrating, unpredictable, chronic autoimmune disease.
I try to be honest with my children about everything, but I wasn't sure how to talk to them about this particular health issue. Perhaps that stems from two decades of feeling the burn of people's eyes on my skin, of having to explain that no, it isn't contagious, and no, there is no cure. Of being so fed up thinking about it and trying to treat it that I don't want to talk about it anymore. Perhaps I just don't want my kids to think I look disgusting. Nothing about red, scaly skin is attractive, after all.
But I can't pick and choose when I'm honest with my kids, and encouraging them to talk about everything has to mean everything, so when my son asked, "Mommy, what's wrong with your skin?" I tried to explain what it was and why it happens in language his 5-year-old brain would understand.
Every illness, condition and disorder is different, but I can recommend the following tips when talking to your kids about your health issues.
Young children don't need to know that you have an autoimmune inflammatory disease, believed to be a result of the immune system going into overdrive and producing skin cells too quickly. A child-friendly explanation could be something like, "My skin grows at a faster rate than other people's." And keep it age-appropriate. "It's important to take the age and developmental level of your child into account here," says clinical psychologist Dr. Jephtha Tausig-Edwards. "You want to keep communications about serious illness factual, without more details than your children can handle or are interested in knowing."
Resist the temptation to try to pass off your psoriasis as a rash or allergic reaction, or to suggest that it's only a temporary condition. Telling the truth is one of the best ways to build trust with children. You wouldn't want your child to feel ashamed if she had a disease or health condition, so try not to do or say anything to suggest that you are ashamed of yours.
"Children do not have a great deal of life experience to help them understand what is going on, so they most likely be confused about what this all means," says clinical psychotherapist Dana Carretta. "Let them know that they're allowed to ask any question that they have, no matter how silly it may seem." Actively encourage your kids to ask questions, but keep your answers concise. "Answer to the limit of the question without providing extra information," says Dr. Tausig-Edwards. Above all, be guided by your child, who may not be old or mature enough to process a lot of information at one time. "It's OK to have these conversations in short bursts over time," adds Dr. Tausig-Edwards. "There is no need to have one long marathon if that's not what you or your child are comfortable with."
Talking to your kids about your psoriasis, and encouraging them to ask questions, provides an opportunity to shut down some myths and improve your child's understanding of the disease. Let them know that it's not contagious, that it's not caused by poor hygiene, and that while there is no cure, there are many treatment options. It might also help to normalize the disease by explaining what your own treatment/management plan involves, how it improves your skin, and what other treatments you may have tried in the past.
The last thing you want is for your own anxiety about your psoriasis to be passed on to your child. Undoubtedly, psoriasis can be stressful (and stress is often a trigger for a flare-up) but that's not a burden for your kids to bear. You don't need to try to be Superwoman all the time, but watching you deal with your disease with courage and self-love is a great life lesson for your kids.