Easy for You to Say: Q&As for Teens Living with Chronic Illness or Disability. 3rd. Ed. Revised and Updated. Miriam Kaufman. Richmond Hill, ON: Firefly Books, 2012. 320 pp., trade pbk., $19.95. ISBN 978-1-77085-099-6. Subject Headings: Chronic diseases in adolescence. Teenagers with disabilities-Conduct of life. Grades 11 and up / Ages 16 and up. Review by Joanne Peters. ***˝ /4

excerpt:

Many teens and young adults have what are now called “special health care needs,” what many of us think of as a chronic illness of disability. . . .

I have the really great job of meeting with young people and talking with them about how their condition affects their lives and their place in their family and in the world. They talk to me about how they feel about their bodies, how they relate to people their age, school issues, drugs and alcohol, medications, moving to adult care, learning how to drive, their worries and many more topics.

I wrote the first edition of this book a long time ago. The world has changed and my patients ask me more and more interesting questions, so I have updated it. I could have written a book just for people with cystic fibrosis or lupus or seizures or transplants, but I decided instead to write for everyone who is living with a chronic illness or disability. . . . Teens with long-term conditions have a lot in common. They also have lots in common with teens who are not affected by any medical problem. (From the “Preface”.)

Miriam Kaufman is head of the Division of Adolescent Medicine at Toronto’s well-known Hospital for Sick Children. With training as a nurse and as a physician, Kaufman has both professional cred as well as a real empathy for adolescents. First published in 1995, Easy for You to Say is now in its third edition, reflecting changes both in treatment modalities for a variety of chronic conditions and in attitudes towards what might once have been seen as insurmountable disabilities. The book uses a “question/comment/complaint-and-answer format” compiled from Kaufman’s discussions with teens, her patients, and colleagues. Confidentiality has been maintained, but the author makes it clear that the questions come from real teens, from a variety of social and ethnic backgrounds, their ages ranging from early adolescence (age 13) to young adulthood. The book covers a wide range of topics, but it is accessible reading, whether you are a teen, a healthcare professional, a parent or a care-giver.

     Although the questions and answers have been clustered into eight chapters, each with a particular focus, the book’s index makes it easy to reference an issue which might be a teen’s specific concern. Nor is it necessary to start at the beginning and read the book in sequence, although it is definitely worth reading in its entirety, regardless of the specific question one might have. The opening chapter, “Family Relationships”, deals with the usual tensions which arise in adolescence, but it also provides insights into the emotions experienced by parents (guilt at having “given” their child a heritable disease, or conversely, a state of denial and a desire not to coddle their son or daughter) and siblings (shame at their brother or sister’s condition). For teens whose parents are immigrants, there are cultural issues, such as the teen patient’s having to translate into English the information provided at a medical appointment at which their parent is present, or a family’s fears that their son or daughter’s illness will lead to their being shunned within their community. Some teens see the strains that their situation is causing their parents’ marriage and others chafe at a family’s over-protectiveness. And, not surprisingly, adolescents with changing bodies struggle with their need for privacy versus their need for medical care-giving which is provided by parents or other family members.

     Dealing with the many different healthcare professionals involved in the care of an individual with a chronic illness can be a challenge for an adult. The chapter on “Doctors and Medical Issues” provides a comprehensive “who’s who” of the many people who provide care and treatment (medical students, interns, resident physicians, nurses, physiotherapists, etc.) in clinical settings. Medical advice can be frustrating, dismissing, or confusing, and this chapter offers a number of helpful strategies for managing the information that may (or may not) be provided to a teen patient. It’s also acknowledged that hospitals are not “fun” places in which to find oneself, and this chapter offers some good coping strategies for teens who visit hospitals on a regular basis.

     Adolescence is a time when friendships are so important, but being hospitalized or having one’s time taken up with many medical appointments makes it difficult to maintain friendships, never mind romantic relationships. “Friends and Dating” explores some of the unique problems faced by teens with chronic medical conditions, such as when to tell a potential boyfriend or girlfriend about one’s illness. And, adolescent concerns about self-image are really tested if a teen has an illness or condition which affects height, weight, or personal appearance. “School and Work” explores the challenges of keeping up with one’s studies, especially if one is hospitalized or is exhausted because of illness or treatment regimens. Entering high school is always a challenging transition, but the challenge is certainly greater for a teen who has previously been attending a “special” school for students with disabilities or special medical needs.

     Parents of teens with chronic medical conditions often assume that their son or daughter will forego the typical adolescent experimentation with drugs and/or alcohol. For individuals undertaking a treatment which involves carefully-regulated dosages of prescription medications, alcohol, cigarettes, and street drugs can all cause interactions which may result in some very serious side effects. The chapter on “Alcohol, Drugs and Medications” makes it clear that, for teens on prescribed meds, chemical experimentation is very risky, and this chapter, along with “Appendix I: Stuff to Know about Medications”, provides a comprehensive listing of potential interactions and outcomes which range from the annoying (acne) to the fatal.

     One of the longest chapters in the books focuses on “Sexuality”, and for many teens with a disability or chronic medical condition, the big question is, “OK, what’s the bottom line? Can I have sex or not?” (190) Kaufman makes the interesting observation that the question would not be asked “if we lived in a society where people with illnesses or disabilities weren’t seen as being asexual.” (191) However, this chapter makes it clear teens with illnesses or disabilities definitely have questions about how they will manage to develop as sexual beings, what birth control methods they can use, and whether it may be possible for them to have children of their own.

     Disabled or chronically ill teens often find limits to their recreational needs. Some medical conditions rule out certain kinds of athletic participation, but the chapter entitled “Recreation” offers plenty of information on the many sports activities which are possible. Still, if you’re a teen with a condition necessitating frequent bathroom visits (e.g. Crohn’s disease), or have to wear diapers because of incontinence, you need some coping strategies, and this chapter provides them. Last, but not least, that all-important rite of teen passage, learning to drive, is an achievable goal even for teens with some fairly daunting physical disabilities.

     Adolescence is a time of “transition”, and that is the title of the final chapter. Transitions for these teens are as varied as those faced by any adolescent. Leaving home to go to college or university is a life change faced by many young adults; transitioning from pediatric to adult medical care, or facing the reality of the final transition – death – are not. The final question posed in the book is, “Am I going to be able to find my own ways of being independent and actually turn into a mature person with some control over my life?” Kaufman answers in the affirmative. It will never be easy, but it will get easier. (297)

     Easy for You to Say is a comprehensive resource for health clinicians in a variety of contexts and for and guidance counselors working in a high school setting. For parents of teens with chronic illness or disability, this book offers perspectives on issues which both they and their children must manage. As a resource for teens, this is a book that probably needs to be “hand-sold”; while the cover isn’t “clinical”, it does not have much visual appeal for adolescent readers. Serious illness or lifelong disability is never easy for anyone, child or adult; however, Easy for You to Say makes it clear that life is for living.

Highly Recommended.

A retired high school teacher-librarian, Joanne Peters lives in Winnipeg, MB.

To comment on this title or this review, send mail to cm@umanitoba.ca.

Copyright © the Manitoba Library Association. Reproduction for personal use is permitted only if this copyright notice is maintained. Any other reproduction is prohibited without permission.

Published by The Manitoba Library Association ISSN 1201-9364

Hosted by the University of Manitoba.

 

NEXT REVIEW | TABLE OF CONTENTS FOR THIS ISSUE -November 23, 2012.

AUTHORS | TITLES | MEDIA REVIEWS | PROFILES | BACK ISSUES | SEARCH | CMARCHIVE | HOME