Coping With a Chronic Family Illness

If you or another member of your family is coping with a serious illness, you know the impact it can have on your children as they confront the anger and anxiety that can come with changing roles and routines.

As a psychiatrist with a background in primary care, I’ve worked with families who are dealing with a wide variety of diagnoses and illnesses – from cancer to neurological problems to serious heart disease. While each family’s situation is unique, I’ve found that there are some common strategies that can be helpful for kids when another family member is very sick and undergoing treatment.

Communication Is Key

Breaking the news is the most difficult part for many parents. The most important thing is that you’re open and honest with your child about what’s going on. Don’t try to ignore or avoid it because most kids notice that something is off – and many have questions and concerns.

Do keep in mind that there’s a fine balance between providing kids with important details and scaring them unnecessarily. A general rule of thumb is to start by explaining in simple terms. I recommend planning for an uninterrupted conversation ahead of time in a place that’s familiar to your child. The calmer you are, the calmer he or she will be when you have the talk. You may want to include another family member who is important in your lives so that person can comfort him or her as you explain the situation, particularly if it’s you who has the illness.

Once you’ve had the initial conversation, continue with open communication. How you go about talking to your child about such a serious issue depends on his or her age and developmental stage. Keep in mind that you are the expert on your child, and what works for one child may not necessarily work for another. So trust yourself and your instincts!

  • Babies and toddlers younger than 3 won’t understand much. They may know something is wrong and notice that you (or your partner) are not around to do familiar things like cook dinner, read before bedtime or play outside. You can say things like, “Mommy is not feeling well today,” or, “You have to play quietly for a while so Mommy can get some rest.”
  • Children ages 3 to 5, they take things very literally. Use words they understand and provide brief explanations. It’s important to separate the illness from the family member. Help children understand that it’s not the family member’s desire to be unavailable: it’s the illness that’s making Mom or Dad take a sick day in bed. If the sick family member feels up to it, you can bring the child to the loved one’s bedside a few times a day to play with toys or read a story. Being in their family member’s presence is often reassuring.
  • For children 6 and older, you can tell them the name of the illness and what may happen as it progresses. For example, you can say, “Mom/Dad/brother/sister has a sickness called lupus that may make him or her feel tired and weak at times.” The bottom line is to follow your child’s lead. If the conversation seems to be upsetting your child, steer it in another direction.

Offer Reassurance

Overall, children, especially younger ones, need to be reassured that the illness is not their fault. I’ve had young patients in the past who feel some fear and resentment when a sick family member is not able to help with homework or leave the house for activities, like soccer games or Girl Scouts. If your children are angry, acknowledge their feelings and let them know it is OK to feel this way. You can explain that you (or whoever is sick) do want to do things with them. Then try to plan something fun but low-key on another day when the sick person has more energy.

Maintain a Sense of Normalcy

When it comes to the everyday, try to keep routines as normal as possible. Let children continue with their out-of-school activities if possible. If you do need to make changes, let your children know ahead of time. Try not to let treatment become so consuming that your children feel overlooked. When possible, continue having family dinners or spending time before bed reading a book together. Maintaining some sense of normalcy is key to the well-being of everyone in the family.

I like to remind adult patients in this situation that no matter who is sick, they should make a conscious effort to express their love and affection to their kids as often as possible. I often recommend setting aside time when the attention is focused only on their kids, even if that doesn’t involve the sick family member. This might mean arranging playdates with family friends or sleepovers with their cousins so your children can continue to be kids and have fun. The time apart also allows the adult to focus on his or her own needs for a while without feeling guilty.

An illness in the family isn’t confined to home life, so make sure someone at your child’s school knows a bit about the situation, whether it’s a teacher or a guidance counselor. You don’t need to go into great detail, but because the effects of the sickness or treatment may influence your child’s behavior, it will help to stay in communication.

Check In

Set aside time to check in with your children regularly so they know they have supportive adults in their lives they can trust. Ask them how they are doing and listen to them. Encourage them to ask questions, and be prepared to provide honest responses that make sense for their age. Make sure not to falsely reassure them by saying that everything will be fine. This will cause them to lose trust in you if things do not go well.

Validate the emotions they experience. Children will likely express a range of feelings, including sadness, confusion, frustration and anger. Try to be open with them about your own feelings so they are aware that others have feelings, too. There will be days when you (or whoever is sick) may feel poorly. Often, children will want to help, so allow them to be included and provide comfort on a bad day.

Ask for Help if You Need It

One of the most important things I tell my adult patients is that if you need help, ask for it. Don’t hesitate to reach out to others if you need to. It’s important not to put too much responsibility on children, so that they can still be kids, not caretakers. If other adults are helping care for your children, try to limit the number of different people who keep the kids feeling safe and calm.

You may also want to talk to a professional about how you’re handling things. Consider finding a counselor or therapist who specializes in helping those with chronic or terminal illnesses. Try the American Psychiatric Association’s Psychologist Locator (locator.apa.org) if you need a place to start.

For more information on how to talk to your kids about serious illness in the family, I recommend reading “Raising an Emotionally Healthy Child When a Parent Is Sick” by Paula K. Rauch and Anne C. Muriel, or “How to Help Children Through a Parent’s Serious Illness” by Kathleen McCue.


Children’s Books for Explaining and Coping with Serious Illness

If you’re looking for a bit of help talking to your kids about a serious illness in the family, consider reading some of the following with them:

  • “You Are the Best Medicine” by Julia Aigner Clark
  • “The Invisible String” by Patrice Karst
  • “Whimsy’s Heavy Things” by Julie Kraulis
  • “My Yellow Balloon” by Tiffany Papageorge
  • “When Dinosaurs Die” by Laurie Krasny Brown and Marc Brown