A Spectator in One’s Own Life: The Comorbidity of Anxiety in Children with Chronic Illnesses

In a SickKids Stories article, a mother describes how her son, Kael, who was bedridden due to a chronic gastrointestinal disease, “was one of those kids who missed out on ‘back to school’ in the traditional sense while being cared for at SickKids” [1]. Although the hospital provided him with a tutor, there remained many challenges for Kael as a result of his absences from school. Despite the educational supports at the hospital, Kael still struggled with simple tasks like writing and had to deal with significant self-esteem issues.1 However, few medical facilities even offer such educational opportunities for patients and, as a result, many children with chronic illnesses struggle with both their academics and the related socio-emotional consequences due to extended absences from school [1].

Not only are these children missing school, but they are also missing out on many other childhood experiences important for development, including social events, sports, and unstructured play time with friends. Through social interaction, children learn many vital life skills, including empathy, showing respect for others, cooperation, and controlling impulsive behaviours [2]. When children are forced to miss out on opportunities for growth and socialization, they also gradually become socially and emotionally isolated from their peers. As children and youth are particularly influenced by social pressures, they are highly susceptible to developing mental health disorders when their disrupted social life begins to negatively impact upon their daily routine [3].

The combination of the physical constraints of the chronic illness and the concomitant social and psychological impact creates an increasingly difficult situation for the child. As a result, these children may feel frustrated and hopeless with all aspects of their lives. In the 1970s, it was determined that social disability can be a side effect of the many psychological issues that children with long-term physical disorders face, and that these social effects can sometimes be more detrimental than the direct effects of their physical illness [4, 5]. This is a correlation that remains true to this day [4, 5].Children may also experience compromised treatment outcomes as a result of the associated psychological symptoms and behaviours, such as non-compliance with medications due to depression [6,7]. Therefore, although it may seem like a minor inconvenience for a child to sit out a soccer match or miss a friend’s sleepover, the cumulative effect of regularly missing out on everyday experiences can be devastating for the child’s social development and mental health. These children gradually become spectators in their own lives, struggling not only with their significant primary health issues, but also with the many social and emotional consequences associated with their illnesses.

While the primary focus of this piece is to evaluate the social anxiety that is often associated with chronic illnesses in children and why this is an important issue, there are also physiological mechanisms associated with certain chronic illnesses which could also lead to the development of anxiety. A 2015 study on inflammatory bowel disease (IBD) found that patients with chronic illnesses have a greater susceptibility to developing anxiety [8]. The researchers further determined that the presence of IBD was associated with abnormal anxiety in 40% of patients in the study[8]. In general, patients with IBD often experience abdominal pain, nausea, and overall weakness, symptoms that can lead to anxiety [8]. Similar comorbidities can be identified in cystic fibrosis, juvenile rheumatoid arthritis and congenital heart disease [6]. Therefore, the physiological symptoms alone seem to have a significant impact on a patient’s general anxiety levels, perhaps predisposing them to further vulnerability in terms of added stresses and anxieties from other sources.

Current research studies on chronic illnesses, such as IBD, and their impact upon patient quality of life have also shown the importance of further investigating the perception of functional disabilities – limitations on activity due to a chronic medical condition [9]. Such research is necessary in order to assess whether they may be vulnerable to developing or internalizing symptoms of depression and anxiety.10 Children with these illnesses are forced to spend significant amounts of time away from their peers and, consequently, are involuntarily excluded from much of their own lives. Spending time in the hospital or at home because of illness and/or treatments, and then having to miss school, trips, extracurricular and other social events as a result, can be physically and emotionally isolating for children. They are not physically with their peers to experience special times and make memories, and so they are missing out on that time to bond, grow, and develop normal, healthy relationships with children who could potentially be a source of support and friendship to them [11]. When these children generally feel unwell, experience acute attacks, or have to adhere to a special diet or spend reduced amounts of time at a social activity, they can begin to feel socially isolated because they feel different from and less healthy than their peers. This is particularly challenging for youth, who are at a time in their lives when fitting in and feeling normal is critical to their emotional development and mental well-being. The social isolation can then exacerbate the anxiety caused by the physiological aspects of their illness [5].

Furthermore, it is difficult for children to rationalize to themselves the realities of their own illness and to manage potentially complicated emotions associated with that reality [11]. It is also difficult for them to fully understand and explain their health issues to their peers [11]. They are often embarrassed to share such details, for fear that others will not understand, be unsympathetic, and will judge them [11]. Consequently, these children are often accused of making excuses, over-exaggerating symptoms, or simply choosing to not fully participate in activities [11]. Therefore, the functional disabilities associated with chronic illnesses present children with many challenges, including social isolation, which may contribute to further anxiety, depression and other mental health issues.

Given the unique challenges that children with chronic illnesses face, there is a need for increased awareness and understanding of this health issue in order to fully support progress in the treatment of chronic childhood illnesses. Although children may receive the medical care they require for the physical symptoms of their illness, certain accommodations must also be in place in order to fully support their treatment and rehabilitation, and to address the related mental health issues. The importance of supporting and accommodating individuals with physical and intellectual disabilities has been widely acknowledged in society. The same level of support should also be extended to children dealing with the functional, “invisible” disabilities associated with chronic illness. Fundraising events or public education campaigns would help to increase awareness of the challenges of these illnesses, and promote empathy and compassion, with the ultimate goal of destigmatizing the associated functional disabilities.

A healthcare facility that has made significant progress in the de-stigmatization of childhood physical and intellectual disabilities is Holland Bloorview Kids Rehabilitation Hospital in Toronto. Holland Bloorview has endeavoured to destigmatize disability to help mitigate the associated mental health issues. This is particularly important, given the relatively high rates of anxiety and depression among children with physical and intellectual disabilities [12]. The hospital’s efforts to raise awareness serve as an example of how educating the public can successfully help to change attitudes and perceptions in society, which in turn helps to promote the mental well-being of the children. Specifically, Holland Bloorview’s Dear Everybody campaign gives its clients the opportunity to share their experiences, to speak out about how their lives have been impacted by the stigmatization of their disabilities, and to convey their desire for greater respect and acceptance in society [13].  As the health care providers and researchers at this hospital have emphasized, children with disabilities should have the same opportunities as other children to fully participate and engage in the many wonderful aspects of childhood, including school, sports and social events. Similarly, children with chronic illnesses need these opportunities and support as well in order to reduce the social isolation and associated mental health issues that they often experience [13].

In order to promote the health and wellness of children suffering from chronic illnesses, there must be a greater understanding in society of the impact that chronic illnesses have upon both physical and mental health. Children should not be spectators in their own lives, relegated to the sidelines and forced to miss out on all that life has to offer. Instead, they must be supported and given the opportunity to fully engage and participate in all aspects of their childhood, so that they are better able to deal with their physical and mental health challenges and live happier, more fulfilling lives.

Written by Sophie Zarb
  1.  SickKids Foundation. Kael’s School Adventure at SickKids [Internet]. 2017 [cited 2018 December 4]. Available from:  https://www.sickkidsfoundation.com/aboutus/newsandmedia/stories2017sepkaelschoolsickkids
  2. Tender Care Learning Centers. Importance of Social Interaction for Early Childhood Development [Internet]. 2018 [cited 2018 December 19]. Available from: https://earlyeducationpros.org/blog/item/86-importance-of-social-interaction-for-early-childhood-development
  3. World Health Organization. Risks to Mental Health: An Overview of Vulnerabilities and Risk Factors [Internet]. 2012 [cited 2018 December 1] Available from: https://www.who.int/mental_health/mhgap/risks_to_mental_health_EN_27_08_12.pdf
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  9. Bannaga AS, Selinger CP. Inflammatory bowel disease and anxiety: Links, risks, and challenges faced. Clinical and  Experimental Gastroenterology. 2015;8:111–7. Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4376063/
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  12. Jaress J, Winicki E. Our Children With Chronic Illness in School: Finding and Bridging the Gap [Internet]. 2013 [cited 2018 Dec 1]. Available from: https://www.gadoe.org/Curriculum-Instruction-and-Assessment/Special-Education-Services/Documents/IDEAS%202013%20Handouts%203/Our%20Children%20with%20Chronic%20Illness%20in%20Schools.pdf
  13. Green, A. Cerebral Palsy and Mental Health [Internet]. 2018 [cited 2018 Dec 1]. Available from: https://www.canchild.ca/en/resources/297-cerebral-palsy-and-mental-health.
  14. Holland Bloorview Kids Rehabilitation Hospital. Dear Everybody – Campaign to end disability stigma [Internet]. 2018 [cited 2018 Dec 28]. Available from: http://deareverybody.hollandbloorview.ca/.

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