When Veronica asked how I was doing, I wasn’t sure what to say. In those brief “greet your neighbor” moments during a church service, how do you articulate to a casual friend that you’ve had an incredibly intense year parenting a teen with mental health issues? So I just forced an awkward smile and told her we were all fine.
After the service, Veronica turned to me. “How’s Ellie doing in college? My kids miss their favorite babysitter.”
I took a deep breath. “Well, um, the truth is…” I fumbled with my purse. “Ellie came home from college in October. She had a lot of health issues, and it didn’t work out.”
Veronica cocked her head. “I’m so sorry. Tell me more.”
So I shared our story. The story of Ellie contracting COVID last June which resulted in debilitating fatigue and unmanageable digestive issues. How giving up gluten seemed like a miracle cure and we cautiously hoped that she would thrive in college. But then almost as soon as we left her in her new dorm room and drove home in our beat-up minivan, she got sick. For eight weeks, she battled mysterious health issues as her anxiety disorder ramped up to a level we’d never witnessed. She quit college, and we’ve been on a merry-go-round of doctors for the past year to find a diagnosis, a process made more complex by her neurodiversity.
Veronica surprised me by revealing her own story of parenting kids with mental health issues. Suddenly I wasn’t alone: we spoke a common language of therapists, treatment centers, and anxiety. Even though her elementary-aged sons’ issues present differently than 19-year-old Ellie’s, we share the same feelings: the constant concern for our kids’ safety, the stress of finding the right treatment plans, the fatigue of attending to the heightened needs of neurodiverse kids. I relaxed as we exchanged understanding glances.
Then Veronica said, “Have you thought about reaching out to Samantha Bend as a resource for dealing with chronic pain?”
An Unexpected Ally
I hadn’t seen Samantha in years. A decade ago, we shared our lives and prayed for each other in a women's group. During that time, Samantha’s struggles with Crohn’s disease gave me a window into the devastation of chronic illness. But after Samantha left our little group, she also disappeared from our church. All I knew was that she had become a therapist. Sometimes I encountered her posts on Facebook.
But Veronica was right. Of all people, Samantha understood the intersection of chronic pain and mental health. She always exuded strength and hope in suffering. So I dug up Samantha’s number, and typed out a text. As my finger hovered over the send arrow, I hesitated. Would it be too weird to reach out to a former friend and open up to her about our struggles?
But I am the type of person who is used to taking relational risks. I ask for help like my kids ask for ice cream. Frequently, deliberately, with the expectation that the outcome will be worth it. I believe in the goodness of God; I also believe in the kindness of humans.
So I hit send.
Samantha replied almost instantly. Later that week, we jumped on a call that lasted forty minutes. A decade of distance melted away. In Samantha, I found a patient listener and a wise advocate.
On the day we talked, I had just gotten Ellie’s diagnosis of an autoimmune disorder (which I wrote about here). Samantha seemed uncannily familiar with this rare disorder; she shot out so many potential resources that I could barely write them all down. In the next week, she sent me a multitude of texts: a support group for young adults with chronic pain, names of therapists she’d contacted who had openings, and a physical therapist who hosted on her website a list of providers for Ellie’s specific condition. Samantha became my sounding board as I navigated the healthcare system. I could not be more grateful for this old friend becoming such a valuable ally.
Holding Fear and Faith
In the past two weeks since we received Ellie’s diagnosis, I am aware of many feelings in tension: despair and hope, fear and faith, anger and gratitude.
On one hand, Ellie’s body looks like it is declining. Her symptoms have become more severe. She has limited her mobility to minimize stairs and walking. She frequently complains of dizziness and exhaustion. It’s almost as if the diagnosis gave her permission to shine a flashlight on her symptoms and that light has made them more pronounced. I’m even more discouraged by the fact that all the local doctors who specialize in treating this condition are booked out for half a year, minimum. All I can do is patch together some general practitioners, add Ellie’s name to waitlists, and hope it’s enough for now.
But I also see evidence of grace, as resources pour out like a waterfall. Another dear friend named Lynn, who I mentored over fifteen years ago, read our Christmas letter about Ellie’s college withdrawal. Lynn offered incredibly helpful resources from her own chronic pain journey, including the benefit of employing a pain psychologist1. I’m convinced that part of what Ellie needs is a different kind of mental health support to detach from the anxiety about pain. Now Ellie has her pick of three therapists specializing in chronic pain, which is the opposite of our experience of hunting for an eating disorder therapist three years ago (tips for finding an eating disorder therapist here). Another close friend immediately referred me to her colleague whose daughter recovered from the same autoimmune disorder; I spoke to this stranger for half an hour this week. Looking back, I can see that the most skilled doctors who have helped Ellie this year are ones that we found through the recommendations of friends. In the most discouraging moments, our friends have helped us find our way.
Blizzards and Trees
There is a story in the Al-Anon book Courage to Change about a driver caught in a blinding snowstorm, unable to see the road clearly. The driver pulls off the road to gain perspective. Then she realizes that she can make it home if she uses the trees that line the road to gauge her position.
That story describes how I feel about making our way through the maze of mental health conditions and chronic illness. Sometimes I feel overwhelmed and paralyzed. Often I feel baffled and confused about which way to go, yet I’m compelled to keep moving to find solutions for Ellie. In this season, my friends are like trees, helping me find my place on the road that leads home. They are also a reminder that help is always available, through a prayer, a text or an unexpected conversation in an ordinary place. And their encouragement and companionship reminds me that even when I feel lost, they are with me in the journey.
I’d love to hear about your experiences of asking for help. When did you feel supported? What has worked well for you? How have old friends become allies just when you needed them?
May we all find the help we need!
“I believe in the goodness of God; I also believe in the kindness of humans.
So I hit send.”
Serena - I’m so sorry for Ellie’s journey with pain. She’s so fortunate to have you as her mom. Your decision to invoke the greater community around you both is courageous and wise. In essence you’re lining up the trees that you are going to use to guide you home.