During Diagnosis and Treatment

How Symptoms Affect Children

Different illnesses present different challenges: each has its own set of symptoms and treatment demands. The way your child experiences your illness is as unique as your family and situation. Your child’s reaction will depend on the limitations you are experiencing, including changes in your ability and energy to do particular things, and how suddenly or gradually these limitations came on. Your children’s ages and temperaments are also important factors in how they understand and feel about your medical condition. When children understand that your medical condition causes a change in your behavior or the rules at home, not lack of consideration for them, it is much easier for them to feel loved and secure within the new family situation.

Fatigue and endurance

One of the most common symptoms of serious illness is fatigue. Parenting is an exhausting endeavor even when you have your full energy level, so fatigue is a huge challenge. When healthy, you may have been able to multitask and run from activity to errand and back again. When fatigue is a way of life, you have to be strategic about where you exert your energy.

Children from about age 5 can understand the idea that you have only so much energy each day, and that you cannot do everything that they or you might want to do today. Even very young children understand the feeling of being tired, though children of any age may not be consistently sympathetic to your limitations. Fatigue affects not only your physical energy; it also affects emotional energy. You may find that you have a lower frustration tolerance, or a shorter fuse, and may need to take time away from stressful situations so as not to make things worse with angry words or emotional reactions that may frighten your children.

Pain

Everything is more difficult when you are in pain. Many medical conditions are associated with muscular pain, bone pain, or abdominal pain. Talk to your health care team to be sure your pain management is as effective as possible. Many larger medical centers, such as Mass General Hospital, have specialists in pain control who may be helpful resources.

If your pain is consistent and predictable, making it impossible for you to do things like lift your child, explain clearly what you can and cannot do. Telling your child what is physically possible and being consistent about it will eventually help your child understand the situation, but expect it to take time. How long and how intensely your child resists the rule will depend on her age and temperament. It is helpful for children of all ages to hear that you find your limitations difficult too. You can join them in the frustration they feel but help direct it against the medical condition and not you. “I really miss being able to pick you up. I wish I never had this back pain.”

If your pain is intermittent and you are able to engage in activities sometimes but not at other times, this will be harder for your child to understand. It is important to make this aspect explicit. “I know it must be confusing to you. I felt well enough to go swimming last weekend and today my headache makes it too hard for me to go.” Part of what makes intermittent symptoms harder for children is that they have higher expectations of you, and thus feel more disappointed when on one day you cannot do what you did on a previous occasion. Putting this into words is helpful too.

As you probably already know, being in pain also affects your mood. If you hear yourself being short with your children when you are in pain, let them know why: “I am irritable (or grumpy) today. My hands really hurt and it puts me in a bad mood. It isn’t your fault.”

Sometimes, it is not the pain itself, but the pain medication that creates the challenge. Pain medication may interfere with your ability to drive a car or even concentrate on the story your child is telling you. Being open about this is important. “I like that my pain medication makes it easier for me to walk, but I don’t like that it makes it unsafe for me to drive the car.” When pain medication interferes with your level of alertness it is especially important to let your child know that it is the medicine, not your interest level, that leads you to nod off mid-sentence.

Concentration and memory

One of the ways that you communicate your love for your children is by listening to them, showing interest in the things that engage and challenge them, and remembering what they have told you. When your illness affects your ability to stay focused on your child’s words or activities, it can hurt his feelings or make him feel he is unimportant to you. Similarly, if your child tells you about something important to him and in a subsequent conversation you have forgotten it, the same unintended emotional injury may occur.

It is important to “translate” your behavior for your child, so that he can remember that you love him in spite of acting in a way that could seem disinterested. Other adults may be better able to talk about this with your child. “I know how much your dad loves you and is proud of your soccer skills. It is really upsetting when he cannot remember important things, like how you scored that amazing goal on Tuesday! It’s really hard that his memory isn’t so good since he got his brain tumor.”

You might also use written reminders that help you ask your child important follow-up questions. Entries in a notebook or calendar may reflect specific things your child has told you about or important events in your child’s school or after-school schedule. “Today was the special assembly. How was it?” “It’s Friday. How did you do on the spelling test?” “Are you ready for the game tomorrow against the Hurricanes?” Using these memory aids also offers you the opportunity to explain what you are doing. “I need to write things down more often now. My memory isn’t so good and I hate when I forget important things going on in your life.”

Difficulty expressing yourself

Some illnesses are accompanied by difficulty speaking due to conditions that interfere with your ability to clearly form words with your mouth or tongue. Other illnesses affect your ability to organize your thoughts into streamlined sentences.

When forming words is the problem, you may be as frustrated as your child by not being easily understood. Pen and paper, keyboards, and even sign language may be helpful aids. Try to meet with a speech and language specialist or other members of your medical team to brainstorm ways to help with this frustrating problem. Remind the medical team that communicating with your children is a priority for you. Also keep in mind that your children value your ability to listen most of all, and that this may be easiest for you right now.

When the problem with expressing yourself originates with your thinking, you may or may not be fully aware of your expressive limitations. You can ask adults you trust to be honest with you about this, and have them help your child understand what is happening.

Appearance

Children of preschool age and older will notice changes in your appearance. Young children may be worried about scars or incisions that look as if they hurt, while bald heads, colostomy bags, infusion pumps, and other physical changes are often met with enthusiastic curiosity.

Seven- to twelve-year-olds may be self-conscious about parents not looking like the parents of their friends. Sometimes you can make accommodations in your appearance, such as wearing your wig at your child’s athletic games or school performances, but other physical changes cannot be easily concealed. In these cases, try to help your child understand that participating in her activities is too important to you to let her discomfort keep you away. It may be helpful to ask your child what she thinks others will be thinking when they see you. Your child may also feel better if she knows what words she could use to explain your appearance to her peers.

Parents—regardless of their appearance—embarrass many adolescents, so it may be difficult to sort out what is normal adolescence and what is a reaction to a change in appearance due to your illness. Talk about and welcome the range of feelings he has. Some teens will feel angry at the people who stare or look at you with pity. You can be a good role model for your child by expressing relative acceptance of your own appearance and trying to understand why people react as they do.

Immunity

Many illnesses and treatments lower your immunity and make it easier for you to get sick with viral or bacterial infections. Concerns about exposure to germs may make it important to enforce strict hand washing in your house, and limit friends from visiting, especially those with runny noses. Talk with your health care team about what is a reasonable level of caution, so you do not put yourself at unnecessary risk or go overboard with restrictions. Talk to the parents of your children’s friends so that they understand the situation and can call ahead with any information about their own child’s health or exposures. A common accommodation at home is to remove shared hand towels from the bathroom and replace them with paper towels that are used once and thrown away.

It is important to clarify that the risk is that you will get sick with an infection, not that you will infect others with your medical condition. You should also explain that it is inevitable that you’ll get an occasional virus. Otherwise, your child may feel guilty and responsible for this expectable occurrence.

Difficulty with anger control

Medical conditions can lower frustration tolerance for many reasons, and make managing anger toward your children difficult. You may be fatigued, on medication, anxious, or have changes in your brain.

Unpredictable and intense outbursts from parents are very frightening to children. Harsh words are difficult to forget. Hitting a child or twisting an arm out of frustration can lead to serious physical and emotional consequences. If you suspect that you are reacting in this way, or if you are sharing parenting with someone who is behaving this way, don’t keep it a secret. Talking about it allows the family to make appropriate accommodations. These may include not participating in frustrating parenting tasks, especially at the end of a tiring day, or not being left alone with young children. It may include the use of medication or counseling support for the family. No parent wants to hurt his or her children. If you are co-parenting with someone who has become explosive, that parent needs to be protected from hurting the children.

Dealing with any symptom

Many other common symptoms change your life and your family’s, such as changes in bowel habits that make it hard to be without a bathroom nearby, inability to eat normally, weakness, dizziness, and loss of vision or hearing. To address any symptoms that you and your family live with, follow the same basic rules. First, talk with your children and try to understand what is hardest about your symptom from their perspective. If there are reasonable ways to decrease the impact of the symptom, seek them out. Brainstorm with your medical team and collaborate with your spouse, friends, or other caring adults to figure out what can be done differently.

In addition to these practical approaches, invite your child to be honest about the range of feelings this symptom evokes. Encourage your child to talk with another adult about the symptom from his perspective. Your child may worry about hurting your feelings or being misunderstood, making it hard to have a frank discussion with you. Try to acknowledge the emotional challenge of accepting what cannot be altered, and then talk about the commitment to being a loving family in spite of the difficulties.