A Mother Finds Her Chronic Pain Tribe

National Pain Report

What You Don’t Know Can Hurt You 

Posted on January 11, 2020 by Jennifer Potter

There was a time in my life when I was genuinely lonely. I reverently refer to it as my “whitewashed life” because for the outsider looking in, my actions gave the appearance of being pleasantly put together, all nice and clean. But the reality was that beneath the business of working full time, managing the health care needs for my medically complex children and trying my best to be a “good” mom, if you looked closely, you would see that my foundation was dry, cracked and brittle. And, although there were people in my life- understanding co-workers, compassionate friends, and a supportive family- who cared about my well-being, I was missing a key component- authentic connection.

It is human nature to desire to be a part of something bigger than ourselves. To be a contributing member of a group. It’s why we join clubs, participate in activities and go to events. But when chronic illness is a part of your life, your ability to commit to these activities is greatly limited. And when you are the parent of a chronically ill child, or in my case, children, your commitment lies elsewhere. Friends disappear, life moves on without you and your “whitewashing” continues.

Don’t get me wrong. It wasn’t that the people in my life weren’t meaningful to me or that they didn’t enrich me somehow, they did, it was simply that because my life differed so greatly from theirs that we often had little in common. I simply wasn’t finding people who wanted to talk about the kinds of things I wanted, or better yet, needed, to talk about, and most of all they didn’t really understand.

On a particularly lonely day I reached out to a friend and shared my feelings of seclusion, sadness over missed opportunities, worry for the future and the overwhelming feeling of being “lost” and asked, “How do you do it?” Her reply was simple. “I found that finding a tribe of people who are rowing the same boat is so important. Reach out to groups and like-experienced people. You fit. Your kids fit. It’s just that you don’t likely fit with the norm. (Normal-whatever that is-is overrated anyway!). Find your tribe.” But who? And where could I find them?

I spent a lot of time searching for other moms who were talking about what I was craving to talk about. My memberships in various Facebook Groups grew and I found surface level support. But my insatiable need for in person connections remained. Something was still missing, I needed something deeper. Focused more than ever, I continued my quest to find what my friend had described as my “tribe”.

And then it happened.

In May 2019, I registered our family to attend the Pediatric Take Control of Your Pain Retreat sponsored by the U.S. Pain Foundation. It was an opportunity to escape our medical routines, have a quick family getaway and gain new insight to managing my children’s chronic pain.   The retreat offered a parent education track and pediatric education track as well as a family fun day- something we all needed. I remember walking in and feeling an immediate connection- this was it! These were the people my friend had told me to find. Throughout the weekend we laughed, we cried, we comforted. We encouraged, we pondered and we problem solved. We embraced our vulnerabilities and immersed ourselves in genuine discussion. They fed my cravings and best yet, my quest for authentic, in-person connection was complete. The women I met filled my loneliness. They were rowing my boat. And just like that, when I least expected it, I found my tribe.

Since that time, my tribe has encouraged, equipped and empowered me. This group of like-minded individuals has helped me to accept myself for who I am, allowed me to acknowledge that doing “my best” is “good enough” and inspired me to become the best possible version of myself. We support, we celebrate, we offer grace and by doing so, we have found that our shared experiences are more compelling and make each one of us stronger. This is my tribe and it has changed my life.

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Authored by: Jennifer Potter

Jennifer Potter is from Houston and works as a pediatric speech language pathologist. She is the mother of two pediatric pain warriors and a US Pain Foundation patient advocate. RELATED POSTS Pain Discussion Brought to Twitter The Comfort That Doesn’t New Research Offers Hope to Those with Phantom Limb Pain Chronically Seeking a Doctor Who Gets It Research Finds Link Between Dry Eyes and Chronic Pain Don’t Be Afraid to Scream Open Letter to Lady Gaga! A Dream Come True 

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