Paige Bussanich, M.S.
AMCHP Senior Program Manager, Children & Youth with Special Health Care Needs
Author’s note: I believe that we all can become empowered when we are able to share our personal stories. When our staff decided to expand beyond the usual bounds for this issue of PULSE, I felt compelled to tell my story, hoping to promote understanding and empathy for others during these trying times, as well as demonstrate the importance of coordinated public health systems. My upbringing was unusual; however, I am resilient and in control of my life because of what I have experienced. My hope is that children growing up during this pandemic facing personal hardships can see their lives through a similar lens.
“Don’t touch your face”: one of the first guidelines shared with the public in the wake of the COVID-19 pandemic. I’ve seen countless memes and GIFs circulating on social media about just how often we rub our eyes, itch our nose, or bite our nails. For most, these behaviors simply are for self-grooming. However, for people like me, these body-focused repetitive behaviors can cause a great deal of distress. Hidden in the Diagnostic and Statistical Manual of Mental Disorders – Fifth Edition (DSM-5), within the little-noticed subcategory of the “other specified obsessive-compulsive and related disorders,” is “body-focused repetitive behavior disorders,” or BFRBs (for my MCH’ers who love acronyms).
By the time I was 10 years old, I had experienced five adverse childhood experiences (ACEs), and was also engaging in significant obsessive-compulsive behaviors, unacknowledged and undiagnosed. I had many routines that I had to follow—this included getting up at 6 a.m. to catch an entire hour of The Weather Channel’s “Local on the 8’s,” For example, from 6:00 a.m. to 6:07 a.m. I would flip between MTV and VH1 to watch music videos; then promptly at 6:07:45 a.m. I would flip to The Weather Channel. Rinse & repeat for an hour. I had many other “checking” behaviors that continued to emerge and manifest, and I was not in any kind of clinical treatment. When I was a teenager, I began to dabble in BFRBs in pursuit of “perfect eyebrows.” To this day, I struggle to overcome my trichotillomania, or recurrent hair-pulling, behaviors.
Many of you might recall Elizabeth Smart. A 14-year-old girl kidnapped from her bedroom in 2002. When that happened, I was about the same age and had blond hair. I was immediately convinced that I too would be kidnapped from my room. The checking behaviors grew more intense, moving from patterns of 3 to 5, I was barely sleeping, and to this day am still afraid I will be kidnapped. I believe it was around this time that I also began to engage in recurrent skin picking, to self-soothe the anxiety.
Even at the young age of 10, I was aware that these were not behaviors that others experienced often. Yet, I just went with the flow and never spoke about it. It wasn’t until I was in graduate school, extremely depressed, and had voluntarily checked myself into a hospital’s psych unit that everything came full circle for me. From my “ivory tower” in the psych unit, I was able to see how all the adverse childhood experiences thus far led to either a positive or negative reaction, and so on. I’m much more self-aware now and continue to receive treatment. I may slip up sometimes—pick at my skin or pull out my eyebrows—but I am also fortunate to have a wonderful husband who helps me to manage these compulsions.
My point in writing this vignette is that we must seek out every opportunity to nurture the world’s children. Children express negative emotions in a variety of ways—sometimes they may lose control due to unbearable feelings, but often they are holding so much inside. If I learned anything from reflecting on my experience, it is that children are magical warriors, bringing so many gifts to the world. This is an unprecedented time and there’s no way to truly know how much this pandemic will affect children’s well-being.
In that light, I want to leave you with a message of hope:
We need you all.
We’re ONE, and in solidarity we’re strong.
We LOVE you all
Everybody play your role
Fall in line. We’re all aligned.