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

As a mother, I am acutely aware of how life can become an overwhelming juggling act. Yet, when your child is grappling with a chronic condition, such as my son’s battle with psoriasis that began when he was just four years old, the stress levels as a parent tend to skyrocket. On top of the usual responsibilities and concerns that come with parenthood, you now find yourself contending with the complexities of managing doctor appointments, seeking support within the school environment, navigating the labyrinth of health insurance challenges, ensuring your child adheres to their medication regimen consistently, and so much more. Balancing all of these demands while still preserving enough energy to care for yourself can seem like an insurmountable task.

I vividly recall those early days following my son’s diagnosis, which now stand two decades in the past. During that time, the landscape of available resources was vastly different from what it is today. There were no readily accessible chat groups, blogs, or extensive online repositories of disease education. The internet did not offer a robust network of support and knowledge-sharing for parents like me who were navigating the complexities of a chronic condition. In those days, I often felt isolated and gripped by fear as I grappled with my son’s psoriasis.

Thankfully, the world has evolved since then, and today, there is a wealth of support and resources available to assist parents in managing their child’s psoriasis journey. Whether your child has recently received a psoriasis diagnosis or is experiencing new symptoms, help is at hand. Let me share some invaluable avenues of support and guidance that I wish I had known about and embraced earlier on in my son’s psoriasis journey. These resources can help alleviate the challenges of parenting a child with psoriasis, making it a bit more manageable and less stressful.

National Psoriasis Foundation’s Patient Navigation Center

The National Psoriasis Foundation (NPF) is a non-profit organization with a noble mission: to spearhead endeavors aimed at finding a cure for psoriasis and psoriatic arthritis while enhancing the lives of those affected by these conditions, including children and their caregivers.

Among the array of free resources offered by the NPF, one that stands out is the Patient Navigation Center. This dedicated team of professionals is there to provide a wide range of support services, including:

• Answering questions about psoriasis, its management, and available treatments.
• Offering a curated list of dermatologists in your geographical area who specialize in treating children with psoriasis.
• Assisting in navigating the often daunting realm of health insurance, helping to cut through red tape and resolve coverage-related challenges.
• Identifying programs and initiatives designed to alleviate the financial burden associated with medications and treatments.

Several years into my son’s psoriasis journey, the Patient Navigators came to our rescue when we faced the need to switch doctors. We had to find a healthcare provider who accepted new pediatric patients, specialized in treating children, and was conveniently located within reasonable commuting distance. The Patient Navigation Center played a pivotal role by significantly reducing the time and effort I would have otherwise expended scouring the internet. They promptly provided a comprehensive list of qualified doctors that met all of my criteria, making the transition smoother and more manageable.

Nurses and Medical Assistants

In the realm of psoriasis management, specialized physicians such as dermatologists often take the lead. However, even the most exceptional physicians have limited time to spend with patients and their families during appointments. As caregivers, we sometimes leave medical visits believing that all our questions have been addressed, only to discover on our journey home that we inadvertently forgot to inquire about crucial matters. Additionally, unexpected and peculiar symptoms may emerge post-appointment, necessitating a swift reach-out to the busy healthcare provider.

This is where the role of nurses and medical assistants comes into play. While they do not replace the expertise and counsel of the physician, they serve as invaluable gatekeepers to accessing the physician’s insights and expertise. While they too are often occupied with numerous responsibilities, they can act as conduits to convey your queries to the physician, ensuring that no question goes unanswered. Establishing a cordial and respectful relationship with the healthcare office staff can prove exceptionally beneficial. In my experience, a small act of appreciation, such as bringing brownies or cookies for the staff, can go a long way in fostering goodwill and enhancing their willingness to assist.

Mentors

The National Psoriasis Foundation extends its support further through the One to One Program, an initiative that enables patients and caregivers to enlist as volunteers to serve as mentors. These volunteers have walked the path you are currently treading, and they bring invaluable first-hand experience to the table.

While this program was not available during the early years of my son’s diagnosis, I fervently wish it had been. Connecting with another parent who has navigated the challenges of raising a child with psoriasis can be a profound source of solace and guidance. Engaging with a mentor allows you to gain insights into managing the disease, provides a glimpse into what to expect, offers practical tips to alleviate symptoms and enhance your child’s comfort, and extends a compassionate ear when you need to share your joys and sorrows. Being able to converse with someone who truly understands your journey can make a world of difference.

In fact, my personal experiences and the knowledge I have accrued over the years have led me to become a One to One mentor myself. I derive immense satisfaction from the opportunity to assist other families in navigating the day-to-day challenges of psoriasis management. Serving as their unwavering cheerleader on the good days and a source of hope during the challenging moments is a privilege I hold dear.

Friends and Family

It is often the case that friends and family members recognize when you are overwhelmed and genuinely want to offer their support. However, they may find themselves unsure of how to extend their assistance effectively. In such instances, do not hesitate to reach out to them and make specific requests for aid. Clear and precise communication about your needs can go a long way in harnessing the support that surrounds you.

You can ask them to accompany you to a doctor’s appointment, ensuring that no crucial questions are overlooked in the hustle and bustle of the medical visit. Seek assistance with household chores once or twice a month to lighten your load. Request a babysitter for a well-deserved night off, allowing you the invaluable opportunity to focus on self-care—a vital component of caregiving.

While friends and family may not always be available at the precise moment you need them, do not be disheartened. Offer alternate ways in which they can assist or suggest alternative days that align better with their schedules. The willingness to provide support is often present; it merely requires effective communication and collaboration to materialize.

Parenting a child with psoriasis undoubtedly presents a myriad of challenges. However, it is crucial to recognize that there exists a network of compassionate individuals and invaluable resources dedicated to making this journey more navigable. The key lies in reaching out and seeking assistance. Even seemingly small gestures of support can accumulate to create a substantial positive impact on the quality of life for both you and your child. Remember that you are not alone, and together, we can surmount the obstacles posed by psoriasis, fostering a brighter and more manageable path ahead.