What I Wish I Knew About Asking for Help When Caring for My Son With Psoriasis

As a mom, I know how easy it can be to feel overwhelmed. But when your child has a chronic disease—like my son having psoriasis since age 4—your stress level as a parent skyrockets. On top of everything else, you now have to worry about managing doctor appointments, getting support at school, navigating health insurance problems, making sure your child takes his medication properly and on time, and more. It’s hard to manage all of this and still have enough energy to take care of yourself, too.

I remember those days, especially early on in my son’s diagnosis. I didn’t know where to turn or what to even ask. That was 20 years ago. There weren’t chat groups, blogs, or disease education resources readily available on the internet. I felt alone and scared.

Thankfully, there is so much more support available now to help. Whether your child was recently diagnosed with psoriasis or they're going through new psoriasis symptoms, there is help. Here are the avenues I wish I had known about and utilized earlier on in my son’s diagnosis and how they can make parenting a child with psoriasis a little bit easier and less stressful.

National Psoriasis Foundation’s Patient Navigation Center

The National Psoriasis Foundation (NPF) is a non-profit organization that aims to drive efforts to cure psoriasis and psoriatic arthritis and improve the lives of those affected. This includes children and their caregivers.

One of the free resources the NPF offers is the Patient Navigation Center. The staff works with you to do so much, including: 

• Answer questions about psoriasis
• Provide a list of dermatologists in your area who see children
• Help cut through the red tape of health insurance challenges
• Locate programs to help lower the cost of medications

Years into my son’s diagnosis, the Patient Navigators came to our rescue when we needed to switch doctors and had to find one that accepted new patients, treated children, and wasn’t located hours away. They really helped cut down on the amount of time I would have been searching the internet by sending a list of doctors that met all of my criteria.

Nurses and Medical Assistants

Oftentimes, specialized physicians like dermatologists are the ones to lead psoriasis management. Even the best physicians have limited time to spend with patients and families during appointments. As caregivers, sometimes you think you have all of your questions answered, just to discover on the way home that you forgot to ask an important question. Or sometimes, unusual symptoms pop up, and you need to reach the busy physician.

Nurses and medical assistants do not replace the advice of your physician, but they can be fantastic gateways to the physician. Of course, they are busy, too, but often they can remind the physician to return your call or help track down the information you need. Building a relationship with the office staff can prove quite valuable. I’ve even been known to bring brownies or cookies for the staff to butter them up.

Mentors

NPF offers the One to One Program where patients and caregivers can sign up to be paired with a volunteer mentor—one who has been there, done that. This program wasn’t available in my son’s early years of diagnosis, but I wish it had been. Talking to another parent who had a child with psoriasis and getting their perspective on managing the disease, finding out what to expect, getting tips on how to make the symptoms more bearable, and just having someone you can cry with would have made all the difference. 

That’s why I signed up to be a One to One mentor. I’m able to help other families get through the day-to-day struggles and be their cheerleader for good days. I can provide hope to those feeling alone, which honestly feels pretty good to me.

Friends and Family

Oftentimes, friends and family see you’re overwhelmed and want to help. It’s just that they don’t know how. Don’t be afraid to reach out and ask them for help. Just be specific as to what you need. You can ask them to go with you to a doctor’s appointment to make sure you don’t miss any questions on your list. See if anyone can help with chores once or twice a month. Request a babysitter for a night off to take some time for yourself, which is so important as a caregiver. 

Friends and family might not be available when you need them. If this happens, don’t get discouraged. Offer an alternate way to help or another day that might work better in their schedule. 

Parenting a child with psoriasis can definitely be daunting. Thankfully, there are people and resources out there to make it a bit easier. You just need to reach out and ask. Even the small helps can add up to make the biggest difference.