Adolescence and Myalgic Encephalomyelitis / Chronic Fatigue Syndrome: Journeys with the Dragon, Naida Edgar Brotherston, MSW, RSW; Haworth Medical Press, 2001

by Mary Robinson, MS Ed

Originally published in Lyndonville News, March 2001; 3(2)

I found this new book by Naida Brotherston to be very interesting. While it is an excellent book about 4 young women dealing with this illness, ME/CFS, I found that Adolescence and Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome: Journeys with the Dragon addresses issues that all adolescents with ME/CFS must deal with. What I loved most about the book was the emphasis on not only the adolescents themselves, but the families as well. ME/CFS has been studied in the context of how it affects everyone and how the relationships are influenced.

The book is intended for all those who must deal with this illness, sufferers and families, medical personnel (doctors and therapists), and school personnel who do not understand what people go through when ME/CFS strikes in the developmental teenage years. The first few chapters deal with how Naida Brotherston came to study this illness and how she gathered her data. The third chapter, Chronology of Illness Experiences, the most lengthly of the book, is mostly first hand quotes of the 4 young women woven in a way to make the information easy for the reader to understand and follows a chronology of how they came to terms with the illness. The author states that the girls did not necessarily come to terms with it in the order documented, but more in a up and down and back and forth acceptance, but it is done chronologically here to make it easier for the reader to understand.

I found myself saying over and over, "Yes, that is the way my family experienced it." The isolation, the coping mechanisms, the emotions, the acceptance, the interplay with family and friends were all so very real and understandable. As a mother it was enlightening for me to read the reactions that these girls had towards their moms and dads. Their was a quest for independence that the girls strive to develop by isolating themselves and trying to learn to structure their activities so that they could get things done without others help and without crashing. "This isolation included an emotional distancing from the caregiver/mother as well, and participants recalled resentment at the attempts of their caregivers/mothers to address their needs." One adolescent expressed anger towards her mom who sometimes would do jobs for her while she was taking a break. Her mother in trying to be helpful was robbing her daughter of some of her autonomy. Gemma stated:

…so I am going to lay down, and I'm going to come back up and I'm going to make the jam. And when I [came] back up, Mom was making the jam…that was just like the most threatening thing on the face of the earth, because here I was trying to take some control, you know, by sleeping and then coming back, and the jam was being made for me! I had… I had no independence!

But sometimes Mom's help is needed. As Val puts it:

That has probably been the biggest issue with me and my mom…my independence and just the whole frustration of me wanting to do things for myself and to be independent and then to have times where I'm desperately in need of her care. And to say, like, "Leave me alone; let me run my life," and then turn around and say, "Help me. I need you to do everything for me."

I found the most personally meaningful statement came from the young woman named, Marina who seemed to understand that ME/CFS is hard on the caregiver/Mom as well. As she talked of sharing a difficult time with her mother Marina says:

So I called her, and I was very upset, and it helped me to talk to her, but it affected her the whole week, and I could see what that had done to her. And now I'm thinking, "Where do I go?" … When I swing down, she crashes ten floors below me all the time, almost.

Many young people do not understand how difficult it is to be a parent and have to watch our children go through such a horrific experience as ME/CFS. It was validating for me to see that these young women did understand that this is an illness that affects the entire family. They also shared feelings towards their fathers, and how the dad's acceptance of the illness affected them.

Moving on to the 4th chapter of the book there was a review of the literature and discussions. This chapter addressed many issues such as stigma of the illness, health care institutions, disability funding, the media, educational institutions, work environment, community and peers, families and chronic illness, and the benefits of support groups to the participants. The final chapter was Research Conclusions and it addressed the limitations of the study, implications for Social Work, and areas for further inquiry.

While Naida Brotherston cautions that this is a work about only 4 young women, I found this did not matter. Her insights into this illness in adolescents and young adults were perceptive and insightful. As the parent of a teenage son who navigated his teens with this illness and a pre-teenage daughter who has spent her childhood coping with ME/CFS, I found what she had to write about was right on the mark for me.

If you have a young person in your life with ME/CFS I highly recommend this book to you. It offered me information and support for the whole range of ages from late childhood to early adulthood and gave me the teenager's perspective that I did not always understand prior to reading this book.

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