Advice For Parents “Mid-Journey” In Supporting Their Youth In Pain
In 2016, our 9-year-old (I’ll call him Y) began having headaches on the way to school. We had a few doctor’s appointments that year, but things got much harder after that. In the years that followed, Y would wake up in unbearable, full-body chronic pain—crying, screaming, unable to make it through the day. Depression followed quickly, along with anger that we hadn’t realized sooner the extent of his health issues, or the underlying autism and ADHD.
We had 50 health appointments that year.
School stopped.
Life shrank.
Today, Y’s pain is down to about 4-5 out of 10—half of what it once was. Mental health is steady, our family relationships are strong again, and even though we still had 60 appointments this year, he’s now able to participate far more actively. Y is 19 now, with confirmed diagnoses, and he goes to concerts and meets friends.
Part of me wishes we were even further along—that he had a job, a clearer plan, more independence. But along the way, we’ve learned a few things that I hope might help others.
Advice No. 1: Prioritize the relationship.
Parenting a child in chronic pain who refuses school, stays in their room, won’t eat independently, and can’t follow through on physio or medical plans… it’s brutally hard. It goes against how many of us were raised. It’s emotionally exhausting.
It took us a long time to differentiate “won’t” from “can’t.”
What finally helped was talking to Y at times when there was no pressure or conflict—slowly rebuilding trust. Sometimes rewards worked (for us: craft kits); consequences never did. We also learned that autism can intensify black-and-white thinking, which made certain approaches counterproductive.
Now, when things escalate, all of us recognize it earlier. We de-stress faster. We protect the relationship above everything else.
Y’s change in pronouns was hard as a parent—but in the context of everything else, it ended up being far from the biggest challenge. And in hindsight, the maturity he has now at 19 compared to 16 is huge. I wish I had a shortcut to offer there, but honestly… time had to do its work.
Has this approach made a difference?
Absolutely.
Y will be with us for several more years while he focuses on health and figures out a vocation—and he’s now genuinely great company. We’re seeing increasing confidence in his medical interactions, and a deeper wisdom in how he talks to family and friends.
Advice No. 2: Do the medical homework.
Y has just seen his 54th health professional—a doctor in Italy who provided Scrambler Therapy that cut his chronic pain in half. He sees a counselor every 1–2 weeks who shares the same health condition. A doctor in the UK is helping reduce histamine load that’s triggering headaches and breathing issues. A specialist in Ireland has finally found a medication that works after eight others failed. And we’ve worked with Dr. Levy to help us support Y through the worst periods. We’ve also connected with the national lead for his condition.
In the early years, we simply “trusted the doctors.” And the advice was often wrong or incomplete. The biggest turning point came when we found online patient communities for his conditions. Our success rate with medical professionals improved dramatically after that.
Top tip: Join well-moderated groups for health conditions, like CHYP or Facebook. But avoid taking direct medical advice from unmoderated influencer content on Instagram or TikTok.
Advice No. 3: It’s OK to be sad.
I’ve shared a lot of progress, and things are better… but this is still a journey.
The truth is: it really sucks that Y has a chronic condition. He recently told me how much he misses climbing trees—something he once loved. Hearing that is heartbreaking.
It’s lonely, too. Other parents talk about their kids going to college or winning awards. Those conversations can be hard to join. When Y had friends over recently, everyone spoke about college plans, while he simply said, “I’m working on my health.”
Most of the time, one of us has a down moment while the other stays steady. But when everyone hits a low point at once… it’s hard.
Still, as this year ends, I’m feeling hopeful.
We have a strong care plan with multiple specialists.
We’re exploring night courses to re-engage with education.
And Christmas will bring plenty of movie nights—full of laughter, teasing, and the spark we’ve always shared.
For any parents walking this road, and for any young person living in pain:
Hang in there.
