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Chronic Illness
Supporting Parents of Children With Chronic Illness
Parental self-care also benefits a child with chronic illness.
Updated February 18, 2025 Reviewed by Abigail Fagan
Key points
- The needs of parents may be lost when a child has ongoing medical needs.
- Our culture of self-sufficiency may make it more difficult to recognize and accept the need for support.
- It is emotionally protective for the family if the illness can be talked about openly.
When a child has a chronic medical illness, the family system evolves to manage the ongoing life turbulence of medical appointments and procedures. Parents become fierce protective advocates for their child. I have been deeply moved by the compassion and determination of caregivers devoted to their child’s needs. But this perspective is also the idealized version of the real-life experience.
A Child's Chronic Illness Can Be Traumatic for a Family
Medical crises are all-consuming. While a child is medically unstable, the family’s focus is on survival. There isn’t room to consider the psychological impact until later.
When the acute danger passes, it isn’t unusual for family members to still feel vulnerable and uneasy when interacting with the medical system. A noise reminiscent of a hospital equipment beep may elicit a cold sweat. In a webinar discussing mental health challenges for families of medically ill children, a father reported feeling debilitating panic when his son complained of minor stomach pains. The current pains ended up being innocuous, but in the past, this symptom had been the harbinger of a medical emergency. It is understandably easy to become hypervigilant to threats.
The increased anxiety reflects that the experience has been traumatic and deserves compassionate care.
Not Accepting Help Increases Distress
The American “pull yourself up by your bootstraps” glorification of self-sufficiency may add unnecessary stress to an already taxing situation. This paradigm — that it is my personal failing if I don’t conquer a difficult situation on my own — is such a part of our Western ethos that a family may not even notice its influence. While self-sufficiency is useful, a family's resiliency increases when they welcome and accept assistance from community, family or friends. A non-profit organization may educate and provide mutual support regarding the child's disorder.
Parenting was never meant to be a job just for parents. The proverb “It takes a village to raise a child” is especially true for a medically complex child.
Parents Aren't Just Caretakers — They Also Require Care
Caregivers of chronically ill children advocate for accommodations so their child can take advantage of community opportunities; they don't want the disease to be their child's defining feature.
In contrast, they may find it simpler to just ignore their own needs.
Parents may feel guilty taking a break. “I don’t feel comfortable leaving my child with someone else; what if something happens?” is a common refrain. Hypervigilance is a common response to medical trauma, and even when the child’s disease is stable, it may be hard to shake.
I’m not saying that parents hand off responsibility without great care. Could a family member, friend or babysitter shadow the parent to learn the ropes? Before committing to an evening out, a brief errand could act as a trial run. Trust is earned not given.
What does it teach a child when parents accept help? They learn how a parent evaluates potential caregivers. The child may feel less precious and fragile. Having more adults who understand their condition makes their world less insular.
It also helps the child when the parent's needs are supported. As one mother thoughtfully shared in the webinar: “How am I supposed to be the best version of a parent if I don’t take care of my simple needs?”
Self-care is important. Anxiety may decrease with meditation (one parent recommended starting with two minutes a day), yoga, or even acupuncture. A participant asked: “If I have no one to share the burden with, would therapy be a good place to start?” The answer is a resounding yes. For symptoms that don’t improve with psychotherapy, medications can be incredibly helpful.
Externalize the Problem — It Makes It Easier to Talk About
How does a family talk about the ongoing stress of a chronic illness? Often, a family buries the topic as they don’t want the person who is ill to feel guilty. Yet, having no way to talk about the ongoing strain exponentially amplifies the emotional burden.
While the child’s illness will be a formative part of their identity, it is also helpful to have the option to separate from one’s disease. Rather than a cancer patient, you are a patient with cancer. I’m not a diabetic; I am a child with diabetes.
In psychiatry, we sometimes take this one step further by externalizing the mental illness as outside the person. A child can name their OCD “Mr. Annoying”. I might ask “Is Mr. Annoying bossing you around a lot today?”
What if we expand this construct to include chronic medical illness?
What if the family references the disease as an outside entity? While this approach may not work for all families, it has the potential to open communication in a novel way.
Let’s imagine a child with inflammatory bowel disease (IBD) in the midst of a flare that upends the family’s schedule:
“The (rather than my) IBD is bossing me around and I hate it,” says the child with IBD
“I understand why you are really frustrated with the IBD when it decides to ramp up before your friend’s birthday party” a parent can say.
“IBD made us cancel our vacation plans,” says a sibling. “It makes me so upset how it hurts my brother and me.”
Parents can model this approach, watching that the language doesn’t malign the ill child, only the disease that is hurting them.
This approach is powerful because it provides permission to be mad, sad, or fearful, rather than stoic, perfect or avoidant.
Rather than saying, “This isn’t your brother’s fault” or “I know you are upset, but we all have to support your brother” the family can shake their fist at the universe together. The child can choose when to separate from their disease, rather than seeing it as a key feature of their identity.
While these strategies may feel complicated and foreign at first, they can bolster the current strength, compassion and resilience of families supporting a child with a chronic illness.
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