Social and emotional effects of having leukemia

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Learn how surviving leukemia can affect a child as they grow up.

Key points

  • Your child's age at the time of their illness can impact how they respond throughout their life after completing leukemia treatment.
  • Fear of relapse is common in both those who have had leukemia and their families.
  • Having leukemia as a child can end up having a meaningful impact on a person's life.

Having a life-threatening illness like leukemia as a child can have a lasting impact on both the child and family. Although you and your child will not completely forget the experience, it can become a small part of their life as they move forward. Your child’s behaviour and emotional health can influence how well they cope in the long run.

Age makes a difference

Depending on your child’s age at diagnosis, current age, gender, and the life transitions they experience as a survivor, they may respond in different ways at different times throughout their life after completing leukemia treatment.

Young children

Because younger children may understand the implications of their disease to a lesser extent than adolescents, they tend to adjust better. However, they can still become socially withdrawn. When children miss time at school because they are in hospital, their existing relationships with friends or ability to make new friends may be affected. The same holds true if they cannot participate in similar activities as their friends. Classmates may also feel uncomfortable around peers with medical conditions if they do not understand their condition.

Adolescents

Adolescents can understand the implications of their disease and may experience a variety of thoughts and emotions. For example, they may desire to move beyond the cancer experience, or may become depressed or anxious after treatment. Adolescents are also learning many skills that are important for their development. One such important skill is learning to become more independent. Being a survivor of paediatric cancer can influence how prepared and how well-equipped teens are to learn these skills. For example, your child will have to become more dependent on you or other caregivers during treatment. Your child's experience may make it difficult for them to become more independent after finishing treatment.

Dealing with uncertainty

Despite having survived leukemia, many childhood survivors do not feel they are completely "free" from their illness. For both survivors and families, the fear of relapse is common. They may be so worried about the future that they find it difficult to enjoy the present, causing a lot of distress.

Your child’s uneasiness may be less apparent as other physical symptoms. It is important to talk to your doctor about your child's distress during follow-up appointments.

Feelings of stress and anxiety

Surviving a serious disease like leukemia can be very distressing, and dealing with medical procedures, hospitalizations, and separation from family and friends can be extremely difficult.

Both your family and your child may experience upsetting thoughts and feelings. Symptoms may be associated with a type of anxiety called post-traumatic stress disorder (PTSD).

Symptoms of PTSD can include:

  • re-experiencing the trauma; for example, troublesome dreams, or flashbacks during leukemia treatment
  • frequent problems with sleep
  • lack of concentration
  • phobia of places that remind you or your child of the experience with leukemia (for example, hospitals)

If you or your child develop these symptoms, talk to any member of your health care team so you can connect with a mental health professional such as a psychologist, psychiatrist, or social worker. They can help you or your child learn to manage these complicated feelings.

What can you do to help?

Watch your own reaction

A lot of research suggests that the way you respond to your child’s illness can influence how your child responds. Adopt a positive attitude and try not to focus on the fear of the cancer returning. This will allow both you and your child to focus on the present and move forward.

Promote independence and social interaction

Encourage your child to spend time with friends, exploring interests or hobbies. Support them in developing interests and participating in activities to meet others. Teach your child how to discuss any late effects they are experiencing with others (if they want peers, educators, or teammates to know about them). What is important is that your child accepts that their cancer is part of their identity -- not the defining feature.

Having childhood leukemia can affect your child in positive ways

Many children who have had leukemia feel "different" from their peers. But this difference can be positive. Your child may feel like they have reached a maturity greater than others their age. As someone who has had cancer, they may find more meaning in day-to-day activities and interactions.

Finding meaning out of their leukemia experience

Going through a life-threatening disease can lead to an appreciation for life. This can be the way to forming new, positive values and priorities. For example, those who have had cancer may adopt a healthier lifestyle or show more appreciation for family and friends. Many survivors develop sensitivity and empathy to others less fortunate, and some even choose careers oriented towards the welfare of others, such as health care.

Developing a strong sense of self and place in the world

A sense of self refers to those character traits (hardworking, sensitive), occupations (teacher, nurse), and social relationships (sister, brother) we consider most important about ourselves. A childhood leukemia survivor with a strong self-identity sees their experience with a positive perspective. They think thoughts like "I am a fighter" and "I can cope." They can incorporate this sense of mastery or strength into a strong sense of identity.

Having expectations for the future

Being committed to reaching productive life goals gives your child something to work towards.

Making use of social support

Building a strong network of social relationships, consisting of family and peers, is a key source of support for many childhood cancer survivors. This support network will give your child a chance to share common experiences and resources.

Last updated: March 6th 2018