Believing children’s pain
The disbelief and invalidation of a child’s chronic pain experience comes not only from loved ones, but also from teachers, classmates, nurses, doctors and other clinicians. Indeed, according to a 2009 study conducted in Canada, veterinarians receive five times more pain training than physicians and nurses! For Professor Forgeron, these gaps in training have consequences for how health-care providers assess, treat and believe — or don’t believe — the pain experienced by children and adolescents.
One cause of this misunderstanding is confusing “acute pain” for “chronic pain”. Unlike acute pain, which may recede as tissues heal and is located in a specific area of the body, chronic pain persists past three months and is not necessarily a direct response to a physical injury.
Professor Forgeron explains that some health-care professionals don’t believe that children with chronic pain are in as much pain as they say they are “because if they were, how could they still be up and about?” However, she notes that the nervous system is very plastic, meaning that “it can change and modulate in the presence of noxious stimulus, such that you no longer need the noxious (pain-provoking) stimulus to have pain.”
To illustrate this, Forgeron points out that individuals tend to refer to their personal experiences of pain when assessing others’ pain. This subjective framework can be problematic when applied to children and adolescents suffering from chronic pain. “Indeed, when they report high levels of pain, such as an eight out of ten on the pain scale, their friends, teachers and even health-care professionals may find it hard to believe because, based on their own experiences, such a level of pain would be debilitating and require rest,” explains Paula Forgeron. “However, the option of staying home in bed all the time is not viable for children and adolescents with chronic pain, as this pain is a persistent part of their daily lives.”
As a result, children and adolescents with chronic pain face a lot of disbelief from their peers, specialists and teachers. “They are considered what some call malingering, like they are just faking it,” adds Professor Forgeron. Yet she states that research shows, on the contrary, that these adolescents tend to hide their pain rather than express it, to prevent disbelief.
According to the researcher, this lack of understanding can lead adolescents to withdraw socially, sometimes even from their best friends, who on top of not understanding or believing them, may be pushing them beyond what they can handle. Such situations can result in increased loneliness as adolescents in pain stay home to avoid being disbelieved or pushed to do things that provoke their pain.
A lonely experience
During her research, Paula Forgeron noticed that many of the adolescents with chronic pain with whom she worked were really struggling socially. “They felt they weren’t understood by their friends. They felt different.” Her subsequent research confirmed that this group was more at risk of developing persistent loneliness. She noted that such chronic loneliness — defined as feeling lonely on a regular basis— is detrimental to both mental and physical health.
Forgeron distinguishes between three types of loneliness: dyadic (e.g., within best friendships), relational (e.g. within a wider friendship circle), and collective (e.g., within a community, such as school). Studies have found that adolescents who are lonelier at school (collective loneliness) are less likely to pursue post-secondary education, “which has a negative impact on socioeconomic status later in life.” In her most recent study, she found that all three types of loneliness predicted higher scores on measures of depressed mood, social anxiety and low self-esteem.
According to Professor Forgeron, it is important to distinguish between loneliness and social isolation: “Loneliness is the feeling or perception that your social relationships and connections don’t meet your desired need, which makes you feel distressed and sad, whereas social isolation is the observable lack of relationships.” For example, a person can have ten close friends but still feel lonely. On the other hand, someone may have only one very close friend, and that is enough to meet most of their social needs and therefore they do not feel lonely.
Paula Forgeron’s research focuses on loneliness rather than social isolation because, in adolescence, research has identified that loneliness is more problematic and a more negative predictor of the outcomes described above than social isolation.
Romantic relationships when suffering from chronic pain
Professor Forgeron also looked at the social functioning of young people with chronic physical conditions, specifically at their friendships and romantic relationships. As the site lead for Canada, she collaborated with a team of researchers in the UK, led by Bernie Carter, to conduct qualitative interviews with numerous heterosexual and same-sex couples where one partner experiences chronic pain.
The results of this research indicate that the level of pain felt is linked to anxiety around the romantic relationship, such as fear of rejection or fear that the partner will leave. However, this does not affect satisfaction with the romantic relationship. According to Paula Forgeron, this is an important finding, as it helps to reassure adolescents and young adults that “just because you have chronic pain, it doesn’t mean that you will not experience a satisfying romantic relationship,” which some of her previous research identified was a concern.
Thus, by better understanding the social factors related to chronic pain and its impact, we can design interventions to improve social, mental and physical health outcomes for young people with chronic conditions, so that they can lead more fulfilling lives. It is crucial that we recognize the pain experienced by children and adolescents as real and that we provide them with the support they need, which must include better training for health-care professionals.