Accepting an Unwelcome Diagnosis

Parenting Teens with Mental Health Challenges

The last thing I expected from my daughter’s medical appointment was a positive diagnosis.

Over the past year, we’ve been trying to uncover the cause of my nineteen-year-old daughter’s chronic pain. While Ellie’s physical health has always been a bit unpredictable, filled with recurrent viruses, digestive issues, and fatigue, I chalked it up to a sensitive system. During Ellie’s preteen years, a battery of tests didn’t reveal much beyond enlarged adenoids. I wondered if Ellie was a hypochondriac. Three years ago, we discovered her eating disorder, and realized that malnutrition and self-destructive habits could have caused many of these issues. 

But soon after Ellie’s high school graduation, she contracted COVID for the first time. Thus began her body’s downward spiral that left her debilitated.

If you’ve ever dealt with chronic illness, you know that it can involve a revolving door of doctors, tests, and drugs. If you are lucky, your test results might point to a clear diagnosis. But that’s not necessarily lucky at all if your condition doesn’t have an easy path to treatment. 

If you’re like Ellie, you bounce from doctor to doctor, telling the same story endlessly, hoping for a solution. We’re grateful that every doctor has been kind, conscientious, and caring. But as doctors exhaust their toolbox, they eventually pass Ellie off to another specialist. In the past ten months, we’ve worked with five specialists in addition to her pediatrician.

Along the way, friends have gently asked if Ellie’s symptoms could be psychosomatic. Given Ellie’s history with anxiety, this is not an unreasonable question. As her physical challenges intensified, Ellie spent hours googling her symptoms, to the point that her knowledge rivaled that of a pre-med student. When I took Ellie to doctor appointments, she played hardball, whipping out terms I had never heard of, questioning doctors on their approach, asking about obscure tests. As time went on, she developed illness-focused anxiety disorder (which is a real condition with a diagnostic code).  All of us, including her therapist, experienced a degree of powerlessness in helping her heal from it. I began to conclude that our friends might be right. Maybe we needed to find a specialist who could train Ellie’s brain to interpret her pain differently.

Just as I was in the midst of hunting for pain psychologists, one of Ellie’s medical tests came back with “suspicious” results. It indicated that she might have a disorder that affects the autonomic nervous system. This is the closest to a positive diagnosis as we have gotten. It stopped me in my tracks, especially in learning that there is no cure for this condition, just treatment options to improve quality of life.

Reactions to an Unwelcome Diagnosis

For Ellie, this news feels like a relief. Someone has finally validated her pain. A doctor’s response affirms that she’s not crazy. She assumes that treatment will help her feel better. Quickly.

But I feel like staring out the window at the birds and trees, unable to find words. It’s a familiar feeling, the one that rose inside me when a therapist announced that Ellie had a serious case of depression. It’s how I felt when an intake coordinator at an eating disorders treatment center advised us that Ellie needed a higher level of care than we expected.

Each time, it’s a shock to my system to hear a medical professional proclaim that my daughter has a severe condition that endangers her health or limits her functioning. When Ellie complains about her symptoms, it’s easier for me to downplay it. Of course, I’m concerned, and I always try to support Ellie. But there’s part of me that hangs out in denial. Because, let’s face it, Ellie takes everything very seriously, from an unexplained bruise on her hip, to her intolerance of certain foods, to her perception that a classmate was rude. But when a medical professional verifies that Ellie has another disability to carry, my denial evaporates. And I am left with two companions: grief and fear.

This stage of initial awareness is always hard. Now that it’s a familiar journey, I know that I’ll need space to cry and yell, and also the freedom to sit in silence. I’ll lean on my faith, my therapist, my husband, support groups, and loved ones who listen well. Al-Anon offers the three A’s to help us cope with difficult situations: awareness, acceptance, action. As an action-oriented person, it’s a helpful reminder to pause before compulsively searching for clinicians and programs for Ellie. I’ll try to make time for what nourishes me: prayerful walks in the woods, bike rides by the beach, potluck dinners with friends, journaling.

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Hope in the Darkness

My experience reminds me that this too will pass. With each new diagnosis, we have always found a way forward. In the most daunting moments, when I feel like we are free-falling without parachutes, we find a cushion to land on.  In prayer, I experience moments of peace, regardless of our circumstances. Eventually, we find the right clinicians and groups. At some point, we move from grief to acceptance about that new condition. It becomes a normal part of our lives that we know how to manage.

Two weeks ago, I gazed in awe at a celestial wonder. Just after dawn, our dear friends Amy and Jake, along with their two teens, picked up me and Ellie’s siblings, William and Leah, so we could watch the solar eclipse in the path of totality. Over the next four hours, the seven of us traveled south in a minivan, singing along to classics like “Here Comes the Sun” by the Beatles and “Blinded by the Light” by Bruce Springsteen.  Finally, we arrived at a deserted park in a tiny town and set up a picnic. The temperature rose into the seventies, and the teens discarded their hoodies to chase each other around a playground. Over the next hour, we donned cheap eclipse glasses, and watched the moon gradually and completely cover the sun. Then we squealed and hugged, as we marveled at the moon, surrounded by a halo of light, for four and a half whole minutes.

I didn’t get a quality photo of the eclipse, but this is what it looked like!

What surprised me was that even when the sun was blocked, somehow slivers of light still broke through. I expected a darkness as black as charcoal and as cold as winter. I expected complete silence, like a deadness, as birds ceased singing and insects were shocked into night. 

But instead, the darkness was not so dark¹ after all. Despite the sun’s hiddenness, the sky still illuminated the park with a soft dark purple glow. One point shone brightly: mountains on the moon allowing brilliant light through.² Even though the birds quieted, the frogs kept croaking. In our little band of seven, we could still see each other clearly, taking selfies and pointing at the sky.

We knew that we were not alone. And we knew that the darkness was temporary. 

At these moments of diagnosis, I feel like we are plunging into darkness. Assuming the future will be bleak, I start to feel cold, alone and desperate. But maybe there is also an invitation to believe that, even in the unknown, we are not as alone as we fear. Even in the darkness, we will still be surrounded by God’s love, light and goodness. 

1. This reminds me of a favorite verse, in which the writer says about God’s constant presence: “Even the darkness will not be dark to you; the night will shine like the day, for darkness is as light to you,” (Psalm 139:12)

2. This is a phenomenon called Baily’s beads