Lessons from a Loving Father

This post is written by a parent with a child in the CHYP community.

Like many parents whose children have suffered from chronic pain, my wife and I searched for a diagnosis for several years. After years of misdiagnoses, gaslighting from the medical community, and family turmoil, finding the Zeltzers at Whole Child LA was the beginning of the end.

Lost at Sea
For years, getting medical answers was like trying to find floating toothpicks in a vast ocean. The doctors we wanted to trust often misdiagnosed our daughter. The psychologist said, “It’s only anxiety.” The neuro-ophthalmologist said she was lying to get attention (“Sometimes we think we see things that aren’t there”). The neurologist was suspicious of us parents (“Sweetie, can we talk privately without your folks?”). Or the doctor would lead us down a dead end (“Once we solve the thyroid problem, you’ll feel much better”).

The truth is that most doctors—even many psychiatrists and psychologists—aren’t trained to identify or treat dysautonomia, somatic, or neuroplastic pain. Calling a symptom “idiopathic” or “sub-clinical” doesn’t make it better! Not only must we advocate for our children, but it’s also imperative that we find skilled practitioners with whom they feel comfortable communicating.

Zebras vs. Horses
During the discovery phase of our journey, doctors would tell us, “When you hear hoofbeats, think horses, not zebras.” This analogy means that illnesses generally are more likely rooted in common causes than obscure ones. Little did we know that dysautonomia (e.g., POTS), neuroplastic pain, and the constellation of symptoms that our daughter exhibited were indeed the hoofbeats of a zebra. While chronic pain and dysautonomia are quite common, from the physicians’ experience, they are a relatively rare breed.

Medications
Our understanding of medicine has also changed. We learned that a prescription couldn’t cure autonomic and somatic illnesses. Medications such as pain meds, antidepressants, and antipsychotics are intended to help the patient get to a place of relative comfort so they can position the patient to begin healing. In essence, the medications are only a means to an end.

Isolation
When we spend so much time and energy supporting a sick child, we unintentionally neglect our other relationships. Everything from our social life to our internal family relationships suffers. Because we were dealing with a zebra, certain well-intentioned friends and family who couldn’t possibly understand our situation judged us. As if COVID wasn’t enough, managing the chronically ill felt utterly isolating. Even if you think you have it under control emotionally, I highly encourage you to consider individual and group counseling – it helped us.

Reflective Listening
I wished we would have listened to our daughter earlier and more often. Overriding her will by forcing her to attend school and see certain therapists likely exacerbated her pain and delayed her path to healing. As my daughter recalls, she wasn’t ready to be put back on the traditional conveyor belt of life.

Though so many stars needed to align for her to improve and for us to heal, learning to communicate effectively has been a significant game-changer for us. With the best intentions, we parents want to solve our children’s problems for them, delaying their maturation and healing.

We could have avoided so many arguments and pain cycles (or at least reduced) if we had only realized that our daughter simply needed to feel heard and understood. The following tips might help you, too:

• Don’t assume you know the underlying meaning of what your child is saying. If needed, request more specific information.
• After carefully listening, paraphrase your understanding of what they said without “parroting” them. Use open-ended questions and avoid judgment as you test your hypotheses. For example, “It sounds like you’re feeling angry about XYZ. How well am I understanding you?”
• Once you’ve confirmed the issue(s), reflect on the topic rather than providing a solution, gently guiding your child to develop their own conclusions and solutions.
• During the conversation, pay close attention to their actions and body language, not just their words.
• Do your best to be patient and not interrupt with questions or comments until they’ve had a chance to unload fully, especially in the beginning when they may be feeling more imbalanced and emotional.
• Finally, give them your undivided attention. Minor distractions, like glancing at your phone, could be interpreted as a lack of interest, care, or love.

Hope
What we hear from our chronically ill children is only part of the story. The Zeltzers frequently reminded us to “watch the feet, not the lips.” With pain especially, we learned that even though our children may be telling us they’re still in pain or not making any progress, improvement is more clearly displayed through their physical actions. Try not to argue with their contentions about pain or attempt to “win the discussion” by pointing out areas of improvement. Those tactics backfired on us repeatedly. Before you know it, the complaints will diminish.

Timing and the Mind/Body Connection
It seems that most pain syndromes begin with one or more triggers and cannot end until the sufferer has taken the time to work through their specific traumas, anxiety, and other matters and consciously elects to move forward. Even with the right mindset, progress is never linear, and setbacks are absolutely normal.

Our daughter spent years exploring traditional therapeutic modalities (e.g., CBT, DBT, psychoanalysis), experimental treatments (e.g., ketamine infusions), and more holistic therapies such as Kundalini yoga, sound baths, and acupuncture. Whereas most treatments helped her process trauma and learn more about herself, she gravitated toward holistic practices. Her fascination with holistic healing and spirituality (a continuation of the “New Age Movement” from the ‘70s) started as a search for holistic retreats and soon morphed into a more focused hunt for pain recovery centers.

We found an inpatient recovery center with a specialty in solving complex pain disorders. She arrived in a wheelchair and checked out two months later, walking alone – a virtual miracle. After two months of inpatient living, she graduated from a supported living environment with intensive outpatient therapies nearby.

Today, she’s still benefitting from therapy, living independently, driving, and training to be a holistic coach and chronic pain counselor. By collaborating with our daughter, we found the right opportunity and support to help her find better health and a renewed purpose in life.