Parenting My Young Adult Through Chronic Pain

This post is written from the perspective of a parent with a child living with chronic pain.

Outside my Reach
A poem by Amy Hayutin Contreras

Elizabeth Stone said that to have a child is ‘to decide forever to have your heart
go walking around outside your body.’

I always thought she meant that I would feel my children’s pain and joy like my own.
That she was speaking to the vulnerability of loving someone so much.

Now I believe she was also speaking to the lack of control
We have over our children’s
Actions
Choices
Bodies.

They felt like they were a part of me.
But the older they become the more clearly I see that
They are not.

It is no longer my job to protect her nor to teach her.
The sand ran out.
Now my job is only to love her
And to watch.
I cannot impart my wisdom.
She cannot learn from my past.
I cannot ease her pain.

“Mom,” she implores, “You cannot make me take care of myself,
that is something only I can do.
When I am ready
On my own timeline
In my own way.”

And she is 19 and
She is sick and
She is right.

So I remember the words of Elizabeth Stone
And I feel my heart beating outside my chest,
Just outside my reach.
And I release my breath.

I wrote this poem at the lowest point in my young adult daughter’s chronic pain and complex diagnostic journey. Right when my child was trying to pull away and become more autonomous as a young adult in college, she needed a significant amount of support from me. We both felt the strain of this push-pull. My daughter did not want to need help or to be told what to do. Her self-esteem took an undeniable hit from what felt like a developmental backslide. As her parent, I struggled with a delicate balancing act: supporting her when and how she needed me, giving her space the rest of the time, resisting my tendencies to try to direct her behavior, quelling my worry and catastrophic thinking, and reaching acceptance of the many aspects of this journey that were out of my control.

After a childhood intermittently riddled with complex medical and psycho-emotional issues, chronic pain came to the forefront of my daughter’s existence in her very late teens and young adulthood as she grappled with the new diagnoses of Ehlers-Danlos Syndrome (hEDS), Fibromyalgia secondary to hEDS, Mast Cell Activation Syndrome (MCAS), Dysautonomia, and Endometriosis. She was in college across the country when I had to act as her medical advocate, find her qualified specialty medical care providers, and support her through ER visits, panic attacks, school accommodations, and endless prescriptions and medical appointments. While the physical distance created an extra burden on me, especially in terms of finding out-of-state providers, I think for her continued path to autonomy it was actually a blessing in disguise.

My own journey with chronic pain and complex medical issues prepared me to believe my daughter, sympathize with her pain, and be a proactive medical advocate for her. But this time, I was most definitely not in charge and had to let my child go at her own pace, on her own terms. I could not orchestrate her self-care, readiness to try the next treatment, adherence to strict regiments, and discipline to avoid destructive behaviors that most 18 to 22-year-olds engage in with little consequence, much less a second thought.

We turned to trusted medical professionals and our daughter’s own treatment team at pivotal flexion points. One of our hardest decisions was allowing her to return to school for her sophomore year despite being so sick. Some of the best advice we got was to enable her to continue living as normal a life as she could. We knew that a medical leave from school might throw her into a tailspin of depression at home. We learned that becoming a “professional patient” is the last thing we should want for our daughter. Any focus she could motivate to devote to her “normal life”──her studies, her art, her friendships──should always remain a top priority as long as she was safe enough.

The other crucial piece of advice we followed was to shift our expectations away from a four-year path to her bachelor's degree. It didn’t matter if the money ran out; she could take out loans. Any one of her medical issues, much less all of her conditions combined, would put most college students on a minimum of a 5-year path. Dropping classes as needed was not a sign of weakness nor a crutch, but rather a means to an end of staying in college and continuing to “adult.” Shifting our mindset about her timeline and our definition of success provided both relief and revelation.

My daughter is now 22, going on 23, and graduated from college with her BA. She is living and working independently, still across the country. Her medical conditions are still very present, but she has matured so very much in terms of her ownership of and engagement in her own self-care. She makes all of her own doctor’s appointments, handles her own myriad prescriptions and insurance submissions, and acts as her own best medical advocate (managing her medication lists, medical history, doctor visit questions, notes, and follow-up). She is also way more disciplined about diet, exercise, medication management, and a healthier lifestyle to prevent flare-ups as much as possible.

Best of all, her spark has returned. When you are in the thick of it with a child in chronic pain, it’s sometimes hard to remember that the pain is not who they are at their inner core. Her true self was always still inside, struggling to emerge from under the layers of burden and suffering. She is happy again, lighter, funnier, and more loving and grateful. Back to her old self…only older and wiser. And I am out of triage mode, back to the sidelines, where I belong, watching her grow and blossom into her amazing adult self.