Parenting with chronic illness

Parenting with chronic illness is not only an added challenge for parents, but research shows children growing up with ill parents could experience higher risk for certain emotional, social and even physical problems.

Many issues related to parenting with chronic illness haven’t been studied in depth. But family communication style, high stress levels and general fatigue and low energy levels likely contribute to the problems. Children with sick parents typically take on some caretaking tasks or do part of the work of parenting themselves or siblings. And research has clearly shown the impact caregiving can have on wellbeing.

However, with the proper support, children can develop resilience. To lessen the impact your illness might have on your child, consider some of the strategies here.

 

Understand what’s appropriate to share at what age.

A concept like “chronic” isn’t easy to understand for a young, healthy child. While honesty can help your child avoid the fear of uncertainty, certain details may not be necessary to share at certain ages. For example, most toddlers do not yet understand that death is permanent, according to BabyCenter. You may have to explain your illness multiple times and in different ways as your child grows up.

For these reasons, planning the conversation beforehand helps. This resource, “Talking With Children About the Serious Illness of a Family Member,” offers ideas for planning and having a conversation.

Every child and family will be a little different. It’s up to you to ultimately decide what your child is ready to talk about. If you’re in doubt about what’s appropriate to share or what kind of language will sink in most easily, seek expert guidelines from a place such as HealthyChildren.org to understand how your children process things based on their age. PBS also offers guides for communicating based on age.

 

parenting with chronic illness

Use the opportunity to teach compassion and empathy.

You can’t control many aspects of how your illness may impact your child, but you can help it to encourage positive coping skills for your child. Discussing sickness in terms of empathy and compassion cultivates those attitudes in your child. Ensuring your child has safe spaces to express his or her feelings abut the illness can help them cope.

If your child starts to show warning signs that he or she isn’t coping well (behavioral issues, trouble at school, unexplained anger, depression, etc.) seek outside support at school, through support groups, or with a doctor or therapist.

Keep in mind that it’s not all bad news. A few studies have shown children of parents with chronic illness show academic resilience for example. And if you foster a healthy, close relationship with them, they are more likely to feel positively about the experience. Caregivers in general experience many benefits.

 

Remember this isn’t your fault.

Chronic illness isn’t your fault. You didn’t ask for the added uncertainty about the future, the unpredictable and possibly scary symptoms, the lack of energy, higher costs of living and other issues illness brings.

So, don’t be too hard on yourself. You can’t take good care of a child if you don’t take care of yourself. Do the best you can to maintain a good attitude and let your kids know you love them. Ask for support where you need it.

If history is any indication, attitudes surrounding chronic illness in the U.S. will shift as it continues impacting larger numbers of people. With greater awareness of chronic illness and its challenges, better support systems are likely to be more readily available, and negative impact of parenting in the U.S. with chronic illness may lessen. (This is also happening with mental illness, for example.)

 

Know you aren’t alone.

Not a lot of resources exist yet for people parenting with chronic illness—especially fathers. It can be lonely. But considering the amount of people with chronic illness in the U.S., others are out there. You aren’t alone.

One mother took note of that and in 2016 decided to start her own blog, Mommy Isn’t Feeling Well. She blogs on topics like napping, facing judgment from other parents, where she finds inspiration and also collects the resources she’s found helpful on this page of resources.

You can also find extensive advice and support from these sites:

 

For now, parenting with chronic illness does bring unique challenges. But when you experience guilt, communication issues, high stress levels, behavioral issues—know that you aren’t alone. And remember that your child is learning important emotional skills along the way.

 

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