TEENS WITH CHRONIC ILLNESS BOOK INFORMATION SHEET

(Working Title: I’m Different, But I’m Still Me;

Stories of Young People Living with Chronic Illness)

My name is Penny Wolf and I am a freelance writer. I am seeking teens living with a chronic illness who are willing to share some of their experiences and feelings in a book about this subject. We all know that the teen years can be tough, and adding a chronic illness into the mix can be one hard pill to swallow. The goal of the book will be to give teenagers like you an opportunity to talk about some important issues you face, in so doing help other young people with chronic illnesses.

The following is a list of the topics the book will address:

• Why me?
• Being different at a time when being “normal” is so important
• Coping with fear; depression
• Dealing with medications
• Where do you turn for support?
• Learning to communicate as an adult with your doctor
• Friendships
• Physical changes due to illness and/or medication
• Whom do you tell about your illness, and how much do you tell them?
• Dating and other relationships
• Redefining yourself; learning to let go of things you might not be able to do and finding new outlets for yourself
• Keeping hope and dreams alive

How Can You Participate in This Project?

You can participate in this book in a couple of ways. I will be creating a questionnaire of the above topics and am primarily looking for young people who are willing to talk and/or write responses to those questions. You may find that a few of the topics are relevant to your life and others are not. If it is not relevant to you, you need not respond. I would like participants to respond either by email, phone or in person.

Another way you can participate in the book is by submitting short essays (500 words or less), poem or drawings that express some feelings you’ve experienced since your diagnosis.

Why participate?

I hope you will benefit from sharing some of your feelings and experiences. But, of course, the most important reason to participate in this book is that you have an opportunity to help a young person like yourself learn to live well with a chronic illness.

Confidentiality

Your real name will never be used in the chapter discussions of the above topics. However, if you submit a creative piece and would like your name used as author or artist, your real name can be used with a written consent from your parents (or you if you are older than 18.) In acknowledging contributors at the beginning of the book, I will identify all participants who wish their names to be used (again only with written consent).

About the Writer

I am a freelance writer who worked for many years as a social worker. As a social worker, I have worked with teenagers in many different settings and situations. I myself was diagnosed with lupus 22 years ago, just as I was beginning my career. Why do I want to do this book? In working with teens and young adults with lupus, I’ve come to understand that there are unique issues that young people with chronic illnesses face—and the sense of isolation and feeling “different” is much more difficult during these years. I think it helps teens to know that they are not alone in facing these issues and this book can help to get that message out.

How to Contact Me

You can contact me by calling me (Penny Wolf) at 704-770-0883 or emailing me at wolfpac03@aol.com.  If you would rather that I contact you, please give your phone number and email address to your contact at the foundation with which you are associated. If you are under the age of 18, I will need your parent’s permission to speak with you.

I look forward to working with you on this exciting project!