When Raina Telgemeier was nine years old, she woke up in the middle of the night with a terrible tummy ache. She had caught her little sister’s stomach bug and spent the night hunched over the toilet. Her flu passed quickly but her tummy troubles were only beginning. Soon she started getting stomach aches at least once a week—sometimes several times a day—and became terrified of throwing up and pooping her pants. “When I had a stomach ache, I would go into a panic spiral,” she says. “My heart would race, my head would pound, my palms would sweat, I would not be able to concentrate.”
Telgemeier’s parents took her to several doctors, who poked and prodded her but couldn’t figure out what was wrong. “I thought that something was very wrong with me,” recalls Telgemeier. “I was confused and scared.” She wrote about her experience with chronic stomach pain and anxiety in her 2019 graphic memoir, Guts.
“Chronic pain can have devastating impacts on kids, their families and their entire lives,” says Christine Chambers, a psychologist, professor and Canada Research Chair in children’s pain at Dalhousie University in Halifax. It might sound like an adult problem, but one in five kids in Canada has chronic pain, and research shows the rate has been going up over the past several decades.
“Many kids with chronic pain go on to become adults with chronic pain, which speaks to the importance of early awareness, prevention and treatment,” she adds. “We’re at a tipping point in terms of recognizing that chronic pain is a significant health issue, but we’re still a long way away from truly acknowledging and supporting kids the way that we should be.”
What is chronic pain, exactly?
Any pain that lasts longer than three months, whether it’s constant or comes and goes, is considered chronic pain. Typically, pain has to be experienced at least once a month for it to be considered chronic. It can be caused by disease, injury or surgery, but often no cause can be found. The most common forms of chronic pain among children are headaches, stomach aches and musculoskeletal pain. About five percent of children who have persistent pain also have a disability, like cerebral palsy, and about 20 percent of children who undergo major surgery, such as orthopaedic procedures to fix broken bones, are left with ongoing pain a year later.
Chronic pain may start as acute pain, which exists to protect the body. For example, if your kid breaks their ankle, the aching reminds them to stay off it until it heals. However, if their ankle has fully healed and it still hurts three months later, the pain has become chronic and is no longer a useful signal. “Chronic pain is a bit like a fire alarm going off even though the fire has been put out,” explains Fiona Campbell, a paediatric anesthesiologist and co-director of the Pain Centre at the Hospital for Sick Children in Toronto.
Studying the causes
Kids can experience chronic pain at any age, but it becomes more common as they get older, skyrocketing at puberty. Experts aren’t certain why puberty triggers chronic pain, but hormonal, physical and emotional changes may play a part. A Canadian study, for instance, found a significant association between big growth spurts and the development of musculoskeletal pain. Another reason could be that some girls get painful periods, which research shows can increase their sensitivity to pain throughout the month.
Girls are more likely than boys to experience chronic pain, just as women are more likely than men. Some studies have found that pain systems work differently in men and women.
Chambers’ resesarch has found that the prevalence of childhood chronic pain has increased over the past several decades, while a separate study found that childhood hospitalizations for chronic pain increased ninefold between 2004 and 2010. Chambers says it’s hard to know if the increase is the result of researchers becoming better at identifying chronic pain or if it represents a true increase in pain. She points out that studies have found that stress and obesity, both of which are increasing among kids, are related to chronic pain, and researchers are interested in learning whether increased screen time and decreased physical activity could be linked to chronic pain. “A lot of factors associated with our modern-day life could be behind some of this,” she says, “but we need more research to clearly articulate what’s going on.”
A child’s genetics, physical and mental health, personality and past experiences with pain, as well as how people respond to their pain, can all play a role in how they experience pain. “Your pain system works like a gate and there are things that open the gate and make it more likely for your brain to perceive pain,” Chambers explains. “So if you’re feeling sad or mad, those negative emotional states can make your pain worse.”
How do you know your kid is in pain?
It can be tough to know if your child has chronic pain, especially when they’re a baby or a toddler. Causes of chronic pain in this age group may include underlying diseases, gas, reflux or repeated medical procedures like getting blood tests.
Isabel Jordan had her first clue that her son, Zachary, has chronic pain when he was a toddler. He fell on the grass and went into an impressive yoga pose, balancing on his belly and stretching out his arms and legs so they didn’t touch the ground. Instead of pushing himself up, he held the pose and cried for his parents to rescue him because he didn’t want to touch the prickly grass. “That was when we realized that the sensation of things touching his body can be painful for him,” recalls Jordan, who lives in Squamish, BC. When Zachary was in elementary school, he developed migraines and joint pain that got progressively worse. Minor injuries like banging his knee would turn into months or even years of chronic pain. When he was 16, he was finally diagnosed with Ehlers-Danlos syndrome, a connective tissue disorder that can lead to chronic pain in the joints, muscles and nerves, as well as stomach pain and headaches. “Pain is his constant companion,” Jordan says.
Signs of chronic pain include being hyper-reactive to things like falls or immunizations (crying uncontrollably or flailing arms and legs) or being hypo-reactive (going limp or not showing emotion). Young children may avoid activities like jumping around at kinder gym or protect their bodies by doing things like covering certain parts with their hands or turning their backs. They may also have changes in behaviour, sleep or appetite, or become clingy.
As kids get older, they become better at expressing their pain, but parents may think that pain is normal. “You expect your kids to be having pain because they’re growing or they’re teething or they’re out and about playing and they fall down,” Campbell says. “Pain seems to be a typical part of growing up, so parents may not notice it drifting into becoming chronic.”
Chambers says parents should always believe their kids and try to help them. “Pain is what the person tells you it is,” she says. “The default should be, ‘We believe you and we’re going to work with you to identify ways to reduce your pain and increase your functioning.’”
Jordan adds that it’s important to advocate for your child because healthcare providers may be dismissive. “He would tell us he was in pain, we knew he was in pain, but people didn’t believe us,” she says.
For Telgemeier, who was eventually diagnosed with irritable bowel syndrome when she was 22, having her pain questioned only made it worse. “I was very sensitive to people saying things like, ‘You’ll be fine,’ or, ‘It’s all in your mind,’” she says. “It’s like, how do you know? You’re not in my body. You’re not in my brain. I’m grateful that my parents at least took me seriously. That was a huge part of me being able to get through this.”
The effects of chronic pain
Chronic pain can interfere with all aspects of a child’s life. It can disrupt their sleep, their appetite and their mood. They may miss school, extracurricular activities and social outings. This can lead to anxiety and depression, which can, in turn, make a child’s chronic pain even worse. Kids with chronic pain are twice as likely to die by suicide and 20 percent more likely to develop substance use disorder as adults. About two-thirds of kids with chronic pain will go on to become adults with chronic pain.
Telgemeier’s stomach aches frequently kept her home from school, causing her to fall behind. She also missed out on a lot of fun experiences—like sleep-away camp, boat rides and trying new foods—because she was afraid she’d get sick. “I spent a lot of time at home by myself, very bored,” she says.
Along with stomach aches, Telgemeier also had anxiety, and the two conditions played off each other. “I don’t know if the panic feelings caused me to feel sick in the first place or if I truly felt sick and then felt scared,” she says. “The two things became so seamless.”
When a child has chronic pain, the whole family feels it. Jordan had been planning to go back to work after having Zachary, but his condition kept her at home. “He required a lot of attention and appointments,” she says. “It was a full-time job.”
When Zachary’s symptoms, which also include nausea and fatigue, worsened in early adolescence, he could no longer go to school full time, play sports or participate in his family’s active lifestyle. “It’s changed the family dynamic quite a bit,” Jordan says. “We love to camp and hike and do all these things that are really inaccessible to him. We also love to watch Marvel movies and play board games, and that’s OK, too.”
How is chronic pain treated?
If you think your child is experiencing chronic pain, you should take them to see your family doctor and get a referral to a specialist if necessary. Unfortunately, Campbell says, primary healthcare providers often lack the knowledge and tools to diagnose and treat chronic pain, and paediatric chronic pain specialists are few and far between.
Whenever possible, healthcare providers treat the underlying cause of the pain. For instance, if a child has stomach aches due to irritable bowel syndrome, they may be advised to reduce their intake of hard-to-digest carbohydrates and take probiotics and medications.
The gold standard for chronic pain treatment is the three Ps approach, a combination of physical, psychological and pharmacological therapies. Paediatric multidisciplinary chronic pain clinics offer the three Ps in one place, but there are only nine such clinics in Canada. This means that many families can’t access them and have to pay out of pocket for treatment, which can quickly add up. A one-hour session with a psychologist, for example, costs about $200.
“The misinformation about chronic pain, the lack of coordination of care and the lack of accessibility of care are key challenges,” says Chambers, adding that a study found that children with chronic pain see an average of 50 healthcare providers before they are connected with someone who is appropriately trained to deal with their pain.
There’s hope, however, that this is changing. In 2019, Solutions for Kids in Pain (SKIP) and the Canadian Pain Task Force both launched. The task force, co-chaired by Campbell, is addressing the barriers that chronic pain patients face in getting care, and SKIP, which is led by Chambers, is spreading evidence-based solutions for paediatric pain across the country. Both initiatives are funded by the federal government.
In the meantime, families that can’t get into a multidisciplinary chronic pain clinic can try to piece together their own three Ps. Physical strategies include physiotherapy, hot and cold compresses, and regular physical activity. Even if a child isn’t ready to go back to hockey or gymnastics, getting moving is important because inactivity can make pain worse.
Psychological strategies include distraction, relaxation, mindfulness and therapies that change thoughts and behaviours around pain. When mental-health care providers work with children, they often use strategies that involve imagination, play, art and storytelling. For example, a psychologist may help a child create a favourite place that they can escape to in their mind when their pain worsens. “Kids have tremendous imaginations that we can capitalize on to help make their pain better,” Chambers says.
Your doctor may recommend over-the-counter pain relievers like acetaminophen and ibuprofen or prescribe anticonvulsants or antidepressants to treat your child’s pain. Cannabis and opioids are rarely used for chronic pain in children as there’s a lack of research on using cannabis to treat children and to treat chronic pain in general, and opioids are powerful painkillers that carry serious risks such as addiction and overdose.
You can also help—or hinder—your child’s healing by how you respond to their pain. Parents can actually make their child’s pain worse by focusing too much on it and trying to reassure them that it will get better, Chambers says. Constantly asking your child about their pain, doting on them and allowing them to miss school can be negatively reinforcing, meaning that it can encourage them to behave in a disabled way. “Pain loves attention, and the more attention it gets, the more it can be felt and experienced,” she says. “At the same time, it’s important that children still feel loved and supported by their parents.”
When parents try to reassure them, kids perceive them as anxious, which can make them also feel anxious and intensify their pain. Chambers suggests trying to distract your child from their pain and encouraging them to practise their pain-management strategies. You can also give them extra attention and special activities on pain-free days and limit activities on sick days.
Zachary, who is now 18, has tried several pain-management strategies over the years, including psychotherapy, physiotherapy, occupational therapy, mindfulness and a variety of medications, including opioids. When his pain is moderate, ibuprofen, ice or heat can help. When his joint pain is severe, he uses his wheelchair, and when he gets “screamer” migraines, he heads to the hospital for intravenous fluids and stronger medication. “We just keep trying things to see what works,” Jordan says. “It’s like throwing spaghetti at the wall to see if it sticks. Different things have worked at different times, but nothing takes the pain away completely. It’s a terrible feeling to see your kid in pain so much and not be able to fix it.”
For about a year, from age 17 until he aged out of the system at 18, Zachary went to the multidisciplinary chronic pain clinic at BC Children’s Hospital. Before that, he and his family were completely on their own. Navigating the system and dealing with multiple healthcare providers was daunting to say the least. “We didn’t have anybody guiding us. We didn’t have any coordinated care,” Jordan says. “It’s a terribly flawed system.”
Kids can also come up with clever ways to manage their pain. Telgemeier—who received talk therapy but no other treatment when she was a kid—turned to writing and drawing, which led to a very successful career. “I discovered that writing and drawing about humorous things gave me an endorphin boost and I could calm myself down from an anxious place by drawing a picture of something pleasant,” she says.
She also played a lot of video games to distract herself from the pain. And when she finally found the guts to open up to her friends about what she was going through, at a sleepover when she was a tween, she felt an enormous amount of relief. “Telling my friends and having them hug me and say, ‘That’s OK. We still love you,’ was really validating,” she says. “Kids shouldn’t be afraid to talk to people, because we all share so many life experiences and feelings.”