Parenting a Child with Psoriasis
As a parent sometimes I wish I could take on the pain or struggles my children face. I think of the time my son spent almost three weeks in the hospital with a continuous high fever. Each time the nurse drew blood, or they rolled him out of his room for biopsies, I wanted to take his place. Turned out he had a life-threatening immune disorder that thankfully was diagnosed and effectively treated. Still, those weeks felt like torture while I helplessly watched and prayed.
Parents of children with psoriasis no doubt can empathize with my feelings as a father. The feelings of helplessness, powerlessness, frustration, and anxiety overcome any loved one watching a hurting child.
I think of the mom who left a comment on one of my blogs on the topic of childhood psoriasis. She wrote about how her heart ached for her child as she stayed up late at night searching online for answers. This concerned mom lamented that she did not have the knowledge or experience to help her child diagnosed with psoriasis.
Another mom didn't think much of the rashes starting to emerge on her eight-year-old son's skin. As an immigrant from East Asia, she supposed it would go away on its own. They just ignored rashes in her home country and most of the time they would clear up. But as her son's condition worsened, she grew increasingly upset and anxious.
Her son's psoriasis stretched her too. She needed to drive in rush hour traffic some forty-five minutes each way to take him to the clinic for ultraviolet light treatments (UVB). At the time she felt anxious driving on the freeway and in the city, but she overcame those fears for her son. During the treatment she frequented local bakeries and grocery stores to buy treats to cheer him up.
Looking back, she regrets not acting more quickly to her son's psoriasis. She and her husband focused mainly on the physical needs of their child—treatments, doctor visits, and insurance concerns. They later admitted not understanding his emotional needs and the nature of psoriasis. She recognizes how many more resources are available to parents today—wishing she had access to those years ago. Now that her son is an adult, she still concerns herself with his diet, sleep, and overall health.
If you hadn't guessed, the latter story is my own mother's. As I look back, I can't help but appreciate the level of concern and sacrifice she and my father had for me as hard-working immigrants. They and their aging parents while caring for a young son living with an unpredictable, chronic immune-mediated skin condition.
I remember those forty-five minute drives to the clinic well. Mom left when the nurse took me to the light box for treatment. I never knew exactly where she went, but after getting dressed and emerging from the clinic, she would always be waiting for me with a treat. I didn't completely understand what was happening to me back then. But when I reflect on those times I see a young child's eyes light up seeing a cream-filled éclair or a jelly filled pastry as much as I see the pain of having psoriasis.
I've never forgotten those small affections and reassurances from my parents trying to make the experience of psoriasis less painful. Only as an adult can I appreciate how much time and energy my mom sacrificed.
Parenting a child with health needs is multifaceted. Parents I've met in psoriasis circles talk about the need to balance the emotional and physical needs of their child. As a visible condition on the skin, the stigma of being different having psoriasis can follow a child wherever they go. The child with psoriasis surely needs the emotional support and understanding of caregivers who advocate for them. At times they may need the space to express their frustrations and hurts.
At the same time, the doctor visits, therapies, and search for relief consumes a ton of time, energy, and potentially financial resources as well. Addressing a chronic condition takes patience whether you are the parent or the child.
Parents are also caregivers who need to care for themselves. When my children endured serious health concerns I heard the analogy of the oxygen mask on an airplane. Before the flight takes off, the crew instructs passengers in an emergency to first secure the oxygen mask on their own face before helping children or others with theirs. Caregivers need support to manage the inevitable sadness, disappointment, or even th guilt associated with a child's health condition. They need time to care for themselves before they can effectively serve their child's needs.
Parenting a child with psoriasis is not a hard job — it's a labor of love. When you love someone there's nothing you won't do for them. Undoubtedly, my parents wish they could reverse the course of psoriasis in my life, especially during my childhood. Yet even though they didn't have those powers, their efforts to search for answers, advocate for my health, and do whatever was needed went a long way in shaping who I am today.
Any suggestions made are not intended to replace the advice of a qualified medical professional. Please consult your healthcare provider prior to making any changes to your treatment, exercise or diet routine.