"Hard" as the overall theme illustrated the difficulties and hardships that come with having a chronic illness. Adolescents felt their life was not as easy because of their chronic illness. Obstacles that they encountered which made their life difficult included treatment regime, controlling symptoms, and integrating their illness experiences into their everyday life. 

Adolescents' perspective on living with a chronic illness: Hard

This theme exemplified that the experience of having a chronic illness meant that adolescents had to work harder. The effort was physical in nature (i.e., doing daily. exercise), mental (i.e., deciding how much medicine to take), and emotional (i.e., feeling frustrated). For some adolescents, "extra effort" meant having to be patient for things to return to normal in their lives or "time consuming" and "annoying" when managing their illness. 

Adolescents' perspective on living with a chronic illness: Extra Effort

This theme exemplified the distress or suffering experienced by adolescents in relation to having a chronic illness. Besides the pain resulting from symptoms, there was pain or distress experienced due to the effects on the illness on the adolescents' daily lives. This pain/distress included feeling left out, feeling different from peers, and lack of understanding and concern by others. 

Adolescents' perspective on living with a chronic illness: Painful

The chronic illness experience also meant that it involved the adolescents experiencing limitations or restrictions. The type of restrictions varied, however, most adolescents experienced restrictions related to eating one's favorite foods, participating in gym/athletic activities and social activities with friends. With restrictions, adolescents felt anger and that their lives can't be "normal."

Adolescents' perspective on living with a chronic illness: Restraining 

The worry that comes with having a chronic illness also added to the difficulties experienced by adolescents. Although worry itself is a type of distress or suffering it's identified as a separate category considering the worry described by the adolescents with much anxiety and fear. Several worries were related to developing complications because of the illness, death, possible isolation, future employment/career choices, and lack of understanding from society. 

Adolescents' perspective on living with a chronic illness: Worrying

Adolescents described what it's like to live with a chronic illness with the following descriptors:
- Hard
- Extra Effort
- Painful
- Restraining
- Worrying

University of Illinois at Chicago

Research has shown that many adolescents have experienced extra effort, restrictions, pain, and additional worries because of having a chronic illness. Although, adolescents also clearly had ways to help them deal with their illness. 

Adolescents' Perspectives of Chronic Illness

Woodgate, R. L. (1998). Adolescents' perspectives of chronic illness:“It's hard”. Journal of pediatric nursing, 13(4), 210-223.

Adolescents' perspectives of chronic illness:“It's hard”

Adolescents with chronic illnesses often experience a "dual crisis," in which they have to deal with complex normative developmental tasks and also the stress associated with the diagnosis and treatment of long-term or life-threatening illness. 

Dual Crisis for Adolescents

Adolescents' perspectives on living with a chronic illness

Adolescents described how they dealt with their chronic illness during hard times. This included:
- Hanging in there
- Not making it their number one priority 
- Making the best of it
- Giving themselves credit
- Talking to someone
- Trying to understand 

Learn Before

Related

Learn After