For teens with a chronic illness or disability, adolescence is a combination of a special developmental period and a difficult set of challenges. Adolescence is a unique developmental time characterized by emerging independence, rapid cognitive and physical growth, and the development of an identity. Peer relationships develop a special significance during adolescence. Chronic illness and disability impose physical limitations, often require repeat medical visits, and can involve complex medical treatments.
A chronic illness or disability can affect an adolescent in many ways:
- Complicating their development of independence
- Interfering with their connection to peers
- Introducing a new set of emotional conflicts during an already emotionally charged time
- Adding stress on relationships due to the limits on social activities or increased need for support
- Imposing physical changes and limitations
- Affecting self-esteem and their self-concept
What parents and caregivers can do
A parent’s and caregiver’s role in a teen’s adjustment to his or her illness is critical. In addition to the health and medical care a caregiver helps provide, there are some important efforts parents and caregivers can make to support their child’s adjustment to their illness. These efforts can go a long way in helping teens, and their family, carry on through the challenges of illness.
Balance
Parents and caregivers can help teens adapt to their illness. This means recognizing the limitations their illness imposes. It also means continuing with life as usual, whenever possible. It is important for families to decide what is realistic for each member to manage and to remain flexible to meet the unexpected demands of an illness.
Family relationships
An illness can stress the entire family as constant demands are placed on its members. Nevertheless, family members maintain a commitment to the family. Family relationships need special attention. Keep communications open. Spend time together that is not focused on the illness. Siblings often feel overlooked when a sibling’s needs demand so much family time. Offering siblings support is also necessary.
Coping
Parents and caregivers help teens learn new ways to cope with the special challenges of an illness. Discussing with teens how their illness is affecting them and finding ways to help solve problems or cope with the feelings is very helpful. Teens can learn to build on their strengths and can even develop pride in their abilities to meet the challenges they face.
Peer relationships
Illness often interferes with routines and social activities. For teens, a particularly devastating consequence can be the weakening or loss of friendships. Friends can grow apart as a result of these changes. Keeping teens involved with their peers and making extra efforts to maintain those connections can go a long way in helping a teen cope with an illness. Helping teens to find new ways to make and maintain relationships is critical during this time.
Hopefulness
Coping with an illness can be discouraging and facing a life-threatening condition can be scary. Keeping hopeful is crucial. Looking for the positive in situations and keeping optimistic are especially important during this time. This does not mean negative feelings should be ignored. Concerns and worries should be recognized. All the possible positive outcomes need to be considered.
Engagement
It is important to include teens in their medical care. Parents and caregivers act as role models for teens, teaching them how to talk with medical providers and ask questions. Encourage teens to answer and ask questions and talk with their doctor and nurses.
School
Illness can impact school attendance and a student’s learning. Parents and caregivers may contact the school to inform them of the illness and absence. If needed, a school plan can be created to accommodate the teen’s health and learning needs. Parents can ask for help from their medical team to support this plan.
Support from family and friends
To cope well with an illness, families often rely on others for help. This support can be available from family and friends and also can include developing relationships with professional experts in the field of illness and disability. Working together with personal and professional supports can help a family receive the best care for their teen while maintaining their daily life.
When to seek help
Coping with the challenges of a chronic or life-threatening illness is a difficult challenge for anyone. For a teen, the more their illness interferes with school, friends, and activities, the more difficult the adjustment to the illness can be. The special challenges of this time can require special help. Most teens find support and guidance important at this time, even if their usual network of family and friends is supportive. But often it becomes important to seek the advice and counsel of a mental health professional.
These professionals can support teens’ coping, development, and health. Teens who have experienced recent changes with friendships or whose physical health is poor because of illness can particularly benefit from professional help. Teens who appear depressed or who show other signs of depression should receive professional help immediately.
Services available
Often medical treatment programs have services available to support teens and their families in managing an illness. These services can include education about the illness or condition, support for coping, and fun activities for teens and their families.
Resources on chronic illness
Whether you’re looking for educational tools, community programs, or crisis support, these resources are here to help families navigate challenges with confidence.
