Although all people with CFIDS face a long, unpredictable journey, young people with this illness face a special set of challenges from which adults are spared. Navigating in good health through youth and trying to discover one’s true self is always a struggle. But growing up with CFIDS often makes youthful self-realization particularly challenging by impeding emotional, intellectual and social development. “CFIDS is harder for young people to manage than adults,” says 20-year-old Rebecca Moore, “because the illness is so exhausting, isolating, depressing and otherwise debilitating. Most young people are ill-equipped to handle CFIDS without support. They simply aren’t as prepared to cope with ongoing emotional and physical stress as most adults are.” A recent high school graduate, Moore has lived with CFIDS and neurally mediated hypotension for over five years. She is the youngest board member of the CFIDS Association of America and the chairperson of the same organization’s CFIDS Youth Alliance (CYA.)
According to Moore, the good news for youth with CFIDS is that “they never have to fail.” In fact, they can thrive by finding support, guidance and friends through organizations such as the CYA, which was formed in 1995 to support children and young adults with CFIDS; their parents and friends. The CYA also advises the Association on matters concerning youth with CFIDS. Governed by an advisory committee, the CYA publishes the 16-page quarterly newsletter, Youth Allied By CFIDS, a vital source of information for young people with the illness. The newsletter is a mini-support group in the sense that “…it gives kids with CFIDS the chance to read about other kids with the illness who are doing well in school, succeeding in life, and making a difference in the fight against CFIDS,” says Moore. In addition, the CYA operates a pen pal club which matches correspondents such as fellow CFIDS youths, parents of CFIDS patients who want to compare notes, and siblings of CFIDS kids.
Getting CFIDS as a child or adolescent can be extremely traumatic. “You don’t know if you’ll ever get better,’ says Moore. “You don’t know if you’ll go back to school, you don’t know if you’ll ever have the energy to sustain a conversation like you used to have.” Moore remembers being “incredibly depressed” after being diagnosed with CFIDS and told there was no cure. Over the years, she has found inner peace as well as a place in society through a number of strategies. Support groups, friendships with other CFIDS kids, CFIDS advocacy, her humor and religious faith have all played important parts in her life. “CFIDS advocacy is a great way to help myself and others with the illness,’ she says. “I’m now helping plan a youth lobby day in Washington, D.C., which will take place in the summer of 1998. We’re going to talk to senators about the importance of funding CFIDS research and other vital CRDS issues. We’ll show the senators photos of CFIDS kids who are too ill to go to Washington. Underneath the photos will be their names and numbers of school days missed. Our slogan is, ‘Come with us to Washington even if you can’t go.'”
Children and teenagers Moore observes, “…want more than anything else to fit in. Young people with CFIDS, though, have an almost impossible time fitting in because most healthy kids don’t understand the illness. Youthful friendships are based on doing, and most healthy kids aren’t interested in kids with CFIDS because they’re often too sick to play or go to music practice or even have a conversation with anyone.” Support groups can bridge social gaps caused by CFIDS and help kids make like-minded friends. “When you have CFIDS,” says Moore, “you need to be with other kids you can laugh with. You need to be with kids who understand what you’re going through so that when you’re having a rough day, you can just say, ‘I’m having a yucky day,’ and move on without having to explain yourself.”
Support groups for teenagers are also valuable for giving kids a chance to be part of a community, for sharing successful coping strategies, for learning how others overcome obstacles, and for finding ways to make their lives as productive and happy as possible. “A support group can also help an individual identify which areas in life to focus on to help fulfill their greatest needs and ambitions,” says Moore. “If you’re in touch with other youth who are making it despite CFIDS, then you can be bolder yourself and aim high.” Moore stresses that even though no one with CFIDS knows when they’ll get better, “a support group can still help them accomplish substantial goals.’ For information on how to join a support group or start one in your area contact The CFIDS Association of America (see address in upper right column of this page).
Moore notes that some young people with CFIDS may not always be able to make it to their support group meetings. Those who are wired into the World Wide Web may visit” electronically by hooking up to CYA’s web site @ www.CFIDS.org/CYA. Here you’ll find back editions of the Youth Allied By CFIDS newsletter, news on CFIDS support groups that exist on the Internet, news on advocacy issues, and articles on CFIDS-related issues such as medicines for CFIDS, education, parenting kids with CFIDS, family life with CFIDS, etc.
“I don’t know if you can keep from being overwhelmed by CFIDS,” says Moore. “But one thing’s for certain: young people can, in fact, they must, figure out how to handle the challenges of CFIDS one at a time. Kids with CFIDS can succeed.” Moore is living proof. Today, she is a respected leader in the CFIDS community. And although it took her five years to graduate high school and she received bed-bound tutoring for three of those years, Clark University in Worcester, Mass. awarded her a science scholarship. “I want to be a pediatrician someday,” she says.