Helping Your Healthy Child Cope with Your Illness
“I’m trying to keep the bubble intact until they approach me about it. I don’t know if they know and just don’t want to have the conversation, or if at sixteen you think your parents are going to live forever.”
“I worry about our kids. There’s so much weight I feel to keep them from being affected by PH.”
Betty Lou and Hannah with their families’ little ones at Conference 2010
If you have pulmonary hypertension and you are a parent, talking to your children about your illness may be one of the most challenging emotional issues you will face with this disease.
How and what you tell your child depends largely on both their age and ability to understand and cope with information. In addition, since how PH affects you will most likely change over time, what information you give your children may need to change over time as well.
Written from the perspective of PH patient with a background in child development and a nurse with experience in talking children through a parent’s illness, this article is meant to serve only as a general guide to begin this important conversation. We highly recommend that after you read this article you take the next step of consulting with child development experts who know your child and your family, such as your pediatrician and a teacher or school guidance counselor.
Infants and Toddlers
If you are going through an intense diagnostic or treatment process, be aware that even at this young age children may be aware that something is amiss. Be prepared for the possibility of changes in your very young child’s behavior, such as disruptions in sleep patterns, regression of milestones (such as potty training), and increased behavioral issues such as tantrums or aggression. These are ways that very small children let us know that they are aware something is different in their world, even when they cannot understand or express it. Stay calm, stick to your routine, and be as nurturing and patient as possible. Remember, when it comes to a baby or toddler’s behavior, most often “this too shall pass.”
Quick Tips (Ages 0-3)
- Keep to normal routine, as much as possible. Familiar surroundings and consistency mean security.
- Use a normal voice and maintain composure to reassure a toddler.
- Any changes in routine should be explained to the child in terms of how it will affect them. This explanation should come prior to the change if possible. For example, “Mommy feels bad today and needs to take a nap, so she can’t play with you right now.”
- Give lots of love and attention. Don’t stop, even if they seem inconsolable. Hugs are wonderfully reassuring to small children.
Preschoolers are self-centered, concrete thinkers. Children at this age may ask questions about your oxygen or medication supplies that they can see, but the inner workings of PH will be well beyond them. Be honest, but don’t give any more information than the child needs to know or wants to ask. Simple answers like, “That is Mommy’s medicine” or “That helps Daddy breathe well at night” will most likely suffice small curiosity. If, however, you have a “But WHY???” stage on your hands, continue to stick to simple answers: “Because the doctor says it helps,” “Because we do things to keep our bodies healthy and this is one thing I do,” etc.
If there is a chance you could become too ill to care for your preschooler for a while, or may have to go to the hospital for a stay, children at this age want to know one thing: “Who will take care of me?” Don’t take it personally if they aren’t overly concerned about your own well-being at that moment – that’s not how their little minds are wired to work just yet. Think through this question ahead of time and come up with a list of special people who will be there for your child if this kind of situation arises. Share the list of people with other caregivers and teachers so that your child can receive a consistent message. Children at this age thrive on predictability, sense of security, and routine. In so much as is possible, make sure these things are in place in case of a crisis.
Another thing to be aware of is that children in preschool may process their understanding of your illness through play. They may act out “doctor” with more sophistication than their peers if they are aware of pumps and cannulas. While this may be a bit unsettling for you, understand that it is a child’s natural way of processing and exploring information. Any fear or uncertainty they have may also be displayed in their play, so be on the lookout for signs that your child is worried about your illness and don’t hesitate to contact your pediatrician for advice on how to best support them at this stage.
Quick Tips (Ages 3-5)
- Small children need lots of hugs when there is an illness/disease in the family. They need extra love and attention and reassurance that they will be cared for.
- Matter-of-fact and brief answers to questions are important. Your feelings should be shared in a simplified manner. For example, “I miss Daddy,” or “I hurt inside.”
- Encourage physical activity, drawing, and music to help the child express their own emotions.
- If the parent is hospitalized, it helps to keep a few of the child’s toys and books at the hospital.
Children at this age are still concrete thinkers, but they are able to visualize on a more abstract level as well. You may want to use a doll or a bear to show where the heart and lungs are so that they can see where the sick part is in the body. Again, as with younger children, keep your conversations brief and concrete. Answer questions very honestly, but don’t provide more information than the child asks or can handle.
You may need to be prepared for questions about your mortality (“Are you going to die?”), if PH is contagious (“Can I catch it?”) and feelings of guilt (“Did Mommy get sick because I was naughty?”). Think through how you will answer these questions for your child. If they aren’t asked, don’t raise them on your own.
Perhaps the most difficult question parents with a serious illness have to answer is about their mortality. Be honest by explaining that all living things will some day pass away, but try not to focus on the fact that your passing may be sooner than a healthy parent’s (remember, we don’t know when medication is going to turn things around or a cure will be found!).
Children at this age still may not react to your illness in a way you might expect. Even after you tell them you are sick, they may run off and play as usual. Do not take this personally! They may need time to process, or they may not have fully grasped the idea just yet. They will in time, and may come to you later with more questions or fears that need to be discussed.
As with preschoolers, look for changes in behavior that signal your child is having difficulty understanding or coping. Depending on how you feel about sharing information on your illness, talking to school personnel may be a very good idea. Classroom teachers appreciate this kind of information so that they can be sensitive to your child’s needs during the day. School counselors may be available to help your child process feelings. Taking a team approach with the school may be the best way to support your child.
Quick Tips (Ages 5-9)
- Early school age children need gentle honesty. If they don’t receive clear explanations about what is happening with their parent’s illness or treatment, they will make sense of it by using their imagination and incorrect information.
- Ask children frequently if they have any questions. They may need many invitations to talk before they feel comfortable voicing a concern. If kids aren’t ready to talk, that’s ok too.
- Ask the child to explain back to you what is happening to the parent who is sick. This will help you know what they comprehend and help you correct any misconceptions the child may have.
- Reassure children they will be cared for and that it is normal to feel angry or afraid.
- Show your feelings to encourage them to share theirs. A sad movie, story or song can encourage reluctant children to express their feelings.
- Unless the child asks for more time with a parent in the hospital, keep hospital visits brief.
Quick Tips (Ages 9-12)
- Children at this age can assume additional responsibilities but they shouldn’t be overloaded. Don’t let the child assume the role of either parent.
- Preteens might seem “selfish” about the way the illness affects them. Try to be patient with them. Instead of punishing children, talk with them.
- Show affection. Model ways for children to deal with feelings and worries.
- Preteens want specific information about prognosis and treatment. Answer their questions and promise them more information as it becomes available.
- Many children will use the Internet to find more information. This can be scary if the information is negative or too technical. Be aware of where they are gathering their information.
- Offer to talk to their friends and their friends’ parents to explain what is happening.
- Keep appropriate people at your child’s school informed about your situation so they can help you with any behavior changes that occur.
Adolescents and Teenagers
By adolescence, kids are able to understand significantly more. The best approach at this age is complete openness and honesty. As with children of younger ages, take your cues from them and don’t over-share.
It is okay to ask more leading questions at this stage to encourage conversation from a teen who may be a reluctant communicator or who is afraid to upset you. Remember we live in the age of the Internet, so if you don’t talk about it, the computer very well might! Be sure you are steering your teen to the right information.
Because they are better able to understand and talk about your condition, it could be tempting to lean on your child as your primary source of emotional support, but this is probably not the best approach. This is not to say that you shouldn’t talk about your feelings together, but avoid asking your teenager to assume an adult role. Keep the lines of communication open and balanced.
Ask your child if they want to talk to a counselor or another trusted adult about their feelings. Know that teenagers’ friends are central in their worlds right now and they may choose to lean on them instead of you. Sharing with your teen’s friends’ parents may help so that other adults can be ready to offer assistance and guidance if necessary.
Quick Tips (Ages 13-18)
- Because people outside the family are so important to them, teens usually cope better than younger children with a seriously ill parent.
- Be aware that teens are feeling torn between a desire to be with their friends and with their sick parent.
- Encourage them to keep up with as many normal social activities as possible.
- Friends are an important source of support for teens.
- Avoid making your teen assume adult roles but involve them in some decision-making activities, too.
- Offer to talk to their friends and their friends’ parents to explain what is happening.
Above all, with children of any age, reassure your child that you love them unconditionally and that getting sick is something that happens sometimes, even when we don’t really understand why. Reassure them that they are healthy themselves and that it is not their fault that their parent is sick.
If your family has a faith or spirituality you wish to impart to your children, be sure to weave that into these difficult conversations. Offer your child an open line of communication. Be on the lookout for signs that they need extra support, and use your community resources as much as necessary.
There is some good information online about talking to your child about life-changing illness. While many of the sources are specific to illnesses like cancer, much of the information below can be generalized so it’s useful to parents living with PH.
- Talking with Kids About Cancer, from the Dana-Farber Cancer Institute
- When a Parent is Sick: Helping Parents to Explain Serious Illness to Children, by Joan Hamilton, R.N. Pottersfield Press. 2001
- Facing Cancer: A Complete Guide for People with Cancer, their Families and Caregivers, by Theodore A. Stern, M.D. and Mikael Sekeres, M.D., M.S. McGraw-Hill. 2004
By Colleen Brunetti, MEd, PH Patient, and Samantha Busam, RN, OCN.
To review Conflict of Interest Disclosures for PHA's medical leadership, visit: Disclosures
Last reviewed: April 2012