Parenting With Chronic Illness
Love, loss, and everything in between
Posted Jan 14, 2019
When most of us think about parenting, we imagine being active participants throughout our children’s lives. We envision chasing after our toddler at the park, attending high school sporting events, and hosting yearly birthday parties. We picture family dinners, bike rides, and vacations to new places. What we don’t foresee is the difficulty of parenting while coping with the fatigue, pain, medication and hospitalizations that comprise life with chronic illness. Can we parent well while living with illness? The answer is a resounding YES. In today’s blog post, we’ll look at some of the challenges associated with combining parenthood and chronic illness and address ways to meet those challenges.
Heightened Emotional Attunement as a Response to Physical Limitations
Many parents with chronic illness battle symptoms that limit their ability to perform physical tasks. Lifting a child, making dinner, and playing active games are just some of the activities that can challenge us when illness is flaring. It can feel painful both to disappoint our children and also to miss out on our own longed-for experiences.
It’s important to acknowledge these losses, both to ourselves and our children. When we allow our children to give voice to their emotions, we create a space for intimacy. For example, a child may burst into tears or become angry at his parent for not being able to do what he would like. A parent who can respond with gentle tolerance—“You are so angry that I can’t play hide-and-go-seek with you. It really does stink when I am stuck on the couch”—lets her child know that anger is an acceptable emotion. “I see you,” is the subtext of this parental response. “I see that you are angry and disappointed, and I still love you. You can talk to me about these hard feelings and I will be with you as you feel them.”
Flexibility is also key as chronically ill parents find ways to meet their children’s needs. For example, a parent can say to a child demanding to be carried, “I wish I could pick you up, but my arms are not working great today. I would love to hold you, though. Could we snuggle together on the couch?” Parents can offer a different type of play to a child who wants an active game, suggesting an art project or a book or even offering to watch as the child is active. “I can’t run with you today, but I can watch you run. Show me how fast you can go!”
Humor also is helpful, as a parent can imagine aloud in an exaggerated fashion the fun things she would like to do with her child if her health allowed. “If my legs were stronger today, I think I would like to jump up to the moon. Would you come with me? What would we do there?”
Working with Children’s Fears
It can be frightening for a child to see a parent experience illness. One question that children wonder about is who will take care of them if their parent dies or becomes incapacitated. Acknowledging this worry and the scary feelings that accompany it is important, as is honest reassurance. “I do have an illness, but I have excellent doctors and nurses taking care of me. Let’s talk together about the things you are worried about.” Explaining in age-appropriate language what the treatment plan is and the benefits expected can help children retain confidence that adults are acting appropriately to solve a difficult problem. Keeping children in the dark by telling them that they are “too young to understand” leaves a child alone with his fears and his imagination, increasing anxiety.
Children also may wonder if they can catch their parent’s illness. Again, empathy and honest reassurance are called for. Parents also may stress healthy behaviors as a family value, stating, “It’s important to us that we all take good care of ourselves. That’s why we try to eat healthy foods and get enough sleep and exercise.”
Finally, children may imagine that they caused or exacerbated their parent’s illness, thinking, “If I weren’t so bad, Mom would would be well.” Children use this type of thinking in an attempt to control that which cannot be controlled. Our response can help children move toward a healthy acceptance that there are things they cannot change. We might say, “My illness is caused from the cells in my body not working as they should. I didn’t cause it, and neither did you. Sometimes things just happen and we don’t know why.”
Involving Other People in Caregiving
Having a network of caring adults in a child’s life is always important but takes on additional meaning when a parent lives with chronic illness. Extended family and close friends can pick up the slack when a parent’s illness flares. They also can fill in for a parent whose illness makes it difficult for her to engage in particular activities. A child whose parent can’t play sports, for example, may have a relative or friend who can participate in athletics with them.
It can be painful to observe other adults’ involvement with one’s child. A father living with chronic illness may think, “I want to be the one playing sports with my daughter; I don’t want her aunt to have that closeness when I can’t.” This is an understandable feeling. Remember, though, that NOBODY can replace you as the parent. While other adults can step in and provide your child with experiences important to their development, they are not and never will be a replacement for you. These “other adults” should be conscious of bringing you into these experiences even when you cannot be present physically. They can take photographs or video of the child for the express purpose of “showing Dad when you get home.” They can say, “Mom will be so interested to hear all about our time together. What do you think she’ll say when you tell her about it?”
Letting Children Know They Matter
Children can feel helpless when a parent is ill, and this helplessness may be expressed in a variety of behaviors. Some children might balk at going to the hospital to visit a sick parent. Others may torment a sibling when a parent is not feeling well. Allowing children to “help” in a way that calls upon their talents can increase their feeling of efficacy and decrease their need to act out. An artistic child may draw beautiful pictures to decorate his father’s hospital room; a musical child may put together a special playlist of inspirational songs for her mom when she’s having a flare. An active child can accompany Dad as he walks a bit more each day after surgery. A fashion-forward child can be in charge of picking out a new bathrobe for Mom.
Letting Children Fly
In all families, including those in which a parent is chronically ill, there comes a time when children push parents away as they prepare for their own adulthood. This emotional separation that occurs in adolescence is painful for all families, but there are additional challenges for parents who live with chronic illness. Earlier childhood feelings can come back with a vengeance, including anger at the parent’s illness, disappointment in the parent for not being healthy, and shame that the parent’s illness makes her “different.” These are developmentally normal feelings that are painful for both teen and parent to bear. The parental closeness that helped the child to manage these feelings when he was younger may feel like a solution that no longer works. The teen may distance himself from his parent, snarling that he “doesn’t want to talk about it.” He may feel guilt (often unacknowledged) about leaving the chronically ill parent behind as he grows into adulthood. The implicit response that the chronically ill parent will want to give to her teen is that the parent can bear the adolescent’s distance without withdrawing emotionally in retaliation. This conveys the important message that “I have my own life and I will be fine as you continue to grow up and live your life. I may have a chronic illness, but I am managing it myself. I don’t need you to sacrifice your life in order that I can go on existing.”
Managing Our Own Feelings
It’s challenging to help our children with their feelings about our illness when we simultaneously are managing our own emotions. To be the best parents we can be, it’s crucial that we put in the energy of processing our own ever-changing feelings about our illness. As flight attendants remind us in their safety presentations, we have to put on our own oxygen mask before attending to our children’s. This is not a task to be done in isolation. Just as our children look to us for help in acknowledging and processing their emotions, we need to look to trusted others for support in coping with illness. Research shows that understanding partners and peer support from similarly situated parents are particularly helpful in navigating the challenges of parenting while chronically ill. Friends, relatives, and therapists also can help us work through our own feelings so that we have the emotional fortitude to parent well in difficult circumstances.
We are of value to our children because—regardless of our health status—we are their parents. The things we cannot do with and for them matter less than the things we can do: responding to them with sensitivity and attention; enjoying the time we have with them; and loving them with our whole hearts.
De Baets, S., Vahalst, M., Coussens, M., et al. (2017). The influence of Ehlers-Danlos syndrom - hypermobility type, on motherhood: A phenomenological, hermeneutical study. Research in Developmental Disabilities, 60, 135-144.
Janotha, B. L. (2011). Supporting parents with chronic illnesses. Nursing, 41(1), 59-62.