By Krista Reed, LSCSW
Children experiencing any illness, either physical or mental, can be a painful challenge for a family. If left untreated, any illness presents serious risks throughout a child’s development. With treatment, parents and children’s lives can become filled with medical appointments, often causing the child to miss school and the adult to miss work. Children may struggle catching up with schoolwork and their extra curriculars may be put on the backburner. Additionally, families may suffer financial hardships through the treatment process, regardless of diagnosis. All these challenges can take an emotional toll on families.
Ultimately, illnesses can be emotionally taxing for anyone, and no illness is without its sacrifices. However, mental illness often presents an additional challenge: stigma. When it comes to mental health conditions, families often receive less support, compassion and understanding than those facing physical illness.
Mental illness is often misrepresented and misunderstood — largely because we cannot “see” it. We can’t tell by looking at someone how much they are suffering and that can influence our response.
Consider these two stories:
Jaxon is a nine-year-old child who is active in soccer, friendly and does well in school. At the beginning of his fourth-grade school year, teachers and his parents notice a sudden change. Jaxon is lethargic, has increased appetite with sudden weight loss and appears to be constantly thirsty. His parents go to their primary care physician, and then to multiple specialists over several months with no answers. Jaxon continues to struggle, and his health issues begin affecting his friendships and schoolwork. Jaxon’s family had to pause his soccer season because the appointments were interfering with practice time and Jaxon was not feeling up to playing.
Eventually, Jaxon is referred to an endocrinologist who diagnoses Jaxon with Type 1 Diabetes. Jaxon’s family goes through intensive diabetes training with the medical staff and learns how to test Jaxon as often as needed and administer insulin. In time, Jaxon begins to feel better and makes improvements at school. Jaxon has regular visits with the endocrinologist until he and his parents are better able to manage his diabetes more independently at home. Jaxon’s parents are struggling with the guilt of their child having diabetes, and they worry about what he can eat at school, and if the school is trained properly to help him. They are exhausted from the countless nights where Jaxon was nearly hypoglycemic.
Jaxon and his family, despite their fears, are likely to receive support and understanding from their community. One can physically see Jaxon’s blood sugar results. When we see numbers and physical evidence of something that is out of the ordinary, it alarms us that actions must be taken — and the visible evidence urges people to be empathetic without question.
Zoey is an eight-year-old girl who is shy, loves animals and is active in dance. During a dance recital, she overheard one of the little girls talking about their mom being sick. Zoey began thinking about what this little girl said repeatedly. Zoey began asking her mom if she was sick and reminding her mom to wash her hands. Zoey began having sleeping issues. She wanted to sleep with mom in her bed because she was afraid her mom would die in her sleep. Zoey’s best friend’s dad said that during a play date with his child, Zoey said she could not watch the movie, Bambi, because “the mom dies and then my mom will die.”
Zoey’s mom takes Zoey to a therapist. Zoey was initially told it was anxiety, yet the treatments were not working. Zoey’s mom talks with several doctors and therapists to see what is going on with her child when she stumbles across one therapist who diagnoses Zoey with obsessive compulsive disorder (OCD). In addition to fearing her mom dying, Zoey begins writing and rewriting all her assignments at school so they appear “perfect” and refuses to eat anything using her hands for fear that her hands are dirty, and she will get sick. Zoey enters weekly therapy sessions with an OCD specialist who assists Zoey and her mom with the treatment and ways to help manage the mental illness.
Zoey’s mom learns that OCD will not go away, and Zoey will need to learn how to manage it. Zoey’s mom blames herself for her daughter’s mental illness and is exhausted working with Zoey’s dance team to find a way that Zoey can remain on the team and get treatment at the same time.
Patrick Corrigan, PsyD, the editor of the American Psychiatric Association’s journal, “Stigma and Health,” claims that a pervasive misrepresentation and misunderstanding of mental illness stigma prevents people living with mental illness from getting the empathy and the services they need. As a result, Zoey — if she is even believed when disclosing her diagnosis — might experience further shame and alienation from her peers.
Imagine that only Jaxon was able to get the treatment when he was a child and Zoey’s challenges were brushed aside and told, “Don’t worry about it” or “This too shall pass.” Jaxon would learn how to manage his diabetes as an adolescent and through his adulthood while Zoey’s OCD would worsen over time, causing increasingly more difficulties throughout her adolescence and adulthood. Mental illnesses do not just “get better” and one cannot “grow out of” a mental illness.
When a child has a medical illness, parents’ (naturally) can be terrified of losing their child (or witnessing their child not living a full life). This thought process, however, does not always translate into the behavioral health world. As a result, we see the drastic impacts of untreated mental illness in youth.
No matter what type of illness a child experiences, both physical and mental illnesses need to be taken seriously. Children deserve recovery and adults deserve support.
Krista Reed, LSCSW, is an OCD/BFRB/BDD specialist in Wichita, Kan. She works with clients ages 6 - 60 for OCD and BDD, and she has written children's books on mindfulness and skin picking.
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