An expert on adolescent health shares tips for families navigating substance use concerns alongside rare disease.

By Gina DeMillo Wagner

Few things cause parents more anxiety than the idea of their teens using alcohol or drugs. But for rare disease families, the worry can be even greater. While new research shows that fewer teens are using substances than in decades past, the risk remains higher for youth with rare conditions.

“We know based on data that youth with chronic medical conditions actually have higher rates of substance use than teens that don’t,” explains Scott Hadland, MD, MPH, Chief of Adolescent Medicine at Massachusetts General Hospital for Children and Associate Professor of Pediatrics at Harvard. That’s because there’s an added burden of stress on kids who live with rare disease, and many are looking for relief. Youth with chronic medical conditions who experiment with alcohol, cannabis, or other substances may notice aspects of their symptoms change, Hadland says. They might feel short-term relief.  But later, they begin to feel even worse than before. It's not a healthy way of coping, but it’s understandable that they might be looking for any way possible to feel better.

The good news is that a little bit of prevention can go a long way. Dr. Hadland sees patients from approximately age 12 until age 30, through many life transitions. When parents and caregivers take a strength-based approach and focus on resilience, he says, teens and young adults with rare disease can thrive. Here, Dr. Hadland offers the following advice for rare families:

1. Approach the topic with curiosity, not judgment. “Sometimes teens are more comfortable talking about what their peers are doing, so you can ask about that,” Hadland suggests. Ask: Do you know people who are using alcohol, who vape or use cannabis? Ask what they’ve seen. Also, ask their opinion about it. Why do they think someone might want to use those substances? Is there anything else they could do instead that would be healthier?

2. Consider the timing of conversations. “Find the right moment to have this conversation,” Hadland says. It’s not Friday night when they’re walking out the door to go out with their friends. It might be on a quiet Sunday morning or a nice evening at home or in the car on a long drive. “Parents should also be prepared to visit this conversation multiple times,” he adds. Teens might resist talking about it the first time, “but that’s not a reason to give up. It’s a reason to try again.”

3. Take a stand. “Teens do need to hear us say that we don’t want them to use substances,” Hadland explains. They need to know that as adults, we don’t recommend it, especially for youth with chronic medical conditions. “You want to make it really clear that their medical condition could get worse because of substance use.” And yet, also make it clear that you want them to talk openly with you about it. Let them know that if they ever need a safe ride or if they feel pressured, you’re available to help.

4. Highlight their strengths. “As parents, we’re often guilty of homing in on what we see as the problem behavior or ways our teens are falling short of expectations,” Hadland notes. “But actually, it’s important to remember that teens with chronic medical conditions have shown enormous resilience and strength living with these conditions for their entire lives.” They’ve probably already started to take on aspects of their own care in an admirable way. So, focus on those positives, he suggests. Reinforce their healthy choices.

5. Begin to let go. “This involves parents gradually ceding the autonomy and primary care functions to the teen to the extent that it’s appropriate,” he says. If you want your teen to gain more independence, you could praise them for taking ownership of their needs and start to empower them to take on more and more aspects of their own care. Perhaps they are ready to set medication reminders on their phone, prepare their own meals, or schedule their own doctor appointments.

6. Offer safe spaces for private conversations. “There are parts of healthcare that teens don’t want to involve their parents in. For example, teens who might be starting to explore sex often don’t want to talk to their parents about it even though we encourage them to,” Hadland notes. Doctors can help facilitate those tricky conversations. Parents can also connect their teen with a therapist, school counselor, or a support group that they trust.

7. Encourage them to build a support network. “The single biggest challenge I see in early adulthood is that medical providers change,” Hadland observes. Some pediatric specialists stop seeing patients when they’re 18 or 21. “On the adult side, things are much faster pace. There’s not as much handholding in the system.” As a result, the burden falls more on the patient to advocate for themselves and build their own network of care.

Above all, it’s important to keep lines of communication open. Transparency, empathy, and honesty goes a long way with this age group. And remember that as parents, you’re not alone. Your medical team is there to offer support and advice along the way.

For more about Dr. Hadland’s work, visit his website.

For more information on substance and mental health treatment programs in your area, call the free and confidential National Helpline at 1-800-662-HELP (4357) or visit www.FindTreatment.gov.