Relief and Support for Parents and Caregivers of Young Children with Eczema
Let’s begin with what is most important - if you are a parent or caregiver to a little one with any degree of eczema, I salute you. I recognize your sleepless nights, your anxiety, your devastating hurt at seeing your baby tear at her own skin. And while that won’t offer you any comfort, I hope you know that you are not alone and that there are resources and communities that can help.
We’ve all seen the statistics. Infant atopic dermatitis, more commonly known as “baby eczema” is typically an inherited chronic skin condition that affects somewhere between 10-20% of children in the United States. The symptoms usually start somewhere between 2 and 4 months of age and can continue well into adulthood. However, statistically speaking the majority of cases clear by age 4.
While the chances of outgrowing this condition are high, it’s important to view the road to recovery through a short-term lens, rather than a long-term one. The days are long, the nights are longer and there are no shortcuts or shortage of scars to be gained along the way. Remember that you are not just raising an infant or a toddler in the midst of all the madness that comes with taking care of a young, developing individual. You’re doing so in extremely harsh circumstances: your eyes can never wander away from your baby while she’s awake; you likely have a significant skin management routine; your child is likely on a restricted diet with high potential for scary allergies; you have managed the art of bandaging wounds and administering medications; you have likely overstretched yourself financially to cover the cost of endless treatments; and let’s not forget that you are doing all of this with little to no sleep and without a significant support system. Let me reiterate, you are my hero.
What is often overlooked in scenarios like yours is that you as the parent are undergoing overwhelming amounts of stress on a consistent basis over a long period of time and the effects of this stress are cumulative, significant and largely ignored. A recent study published in Archives of Disease in Childhood concluded that “moderate to severe childhood eczema should be regarded as a significant illness in which maternal stress is equivalent to that associated with the care of children with severe developmental and physical problems.” Does that resonate with you? My hope is that this gives you or a loved one a better perspective on this experience.
In the absence of large scale programs or government-sponsored resources, what can parents of children with eczema do to find much needed support and relief?
If you are the parent or caregiver, start by finding a parent support group. Dive into your social media network of choice and do a quick search - use a hashtag or search for a specific group. You’ll find countless parents posting about their experience through photos, advice, or encouragement. Consider posting about your experience if you’re comfortable with it - remember, it might help someone else and it might find them at just the right time. For instance, when I first started looking online for the resources available to me, I found a wonderful woman who had been openly sharing her son’s battle with eczema on Instagram. As a photographer, she revealed the honest truth behind her son’s devastating struggle. Full of hope and hopelessness, each image told the story of a boy whose condition while prominent, was not defining. Perhaps most significantly, he and my son had the same name. I was in the first two months of our eczema journey and finding this profile meant the world to me.
If and when you feel more comfortable with being open about your baby’s condition, recruit friends and family to help. Map out a treatment plan and itemize all of the medications, doctor’s visits and supplies you’ll need for each stage. Then ask for help. Beating eczema takes an extraordinary amount of effort and financial resources and no single human (or a couple) should have to bear the burden alone - especially not when there are loved one’s a phone call away. Remember, every little bit helps so don’t be ashamed to ask. Likewise, ask aunt or uncle to spend the night so you can catch up on sleep. You’re no good to your baby if you’re completely worn down.
Finally, if you are one of two parents and you’re feeling overwhelmed - delegate. Parents of eczema babies have extensive to-do lists that go above and beyond those of parents with non-eczema children. Skin management protocols, dietary supplement administration, cooking (or ordering) with ingredient restrictions while meeting nutritional requirements, treatment and product research, and the list goes on. You don’t need to do it all yourself and by delegating to your partner you not only remove items from your mental to-do list (which is cumbersome and adds to your stress), but you enlist them to be an active participant in the process, thereby making sure you’re not alone in it.
The road to full recovery is long and very bumpy. There will be set backs and moments of celebration, and it’s important to remember that it’s a marathon and not a sprint. Take care of yourself so you can continue taking great care of your baby!