Kids Coping With CFIDS:
Children Explain What it's Like to Live with
Originally published in The CFIDS
Chronicle, Spring 1996
While it is hard for anyone to deal
CFIDS, it is particularly hard for kids. They face the physical, emotional,
relational and spiritual pressures without the maturity that comes with life
experience. Their debilitation prevents them from being involved fully in
crucial developmental years of their lives. Most of them are too sick to attend
school or be involved in the activities that help children define their gifts
Listen to their insights about their
losses, their coping strategies and their needs.
Grieving and Accepting the
"The hardest part of
living with CFIDS," reflects our daughter, Alisa, whose eight-year battle with
CFIDS began when she was nine years old, "is accepting all the losses. The
symptoms, pain and debilitation are hard, but I've learned to live with those.
I've lost the ability to have a social life, to be part of my friends' lives. In
a way, I've lost my self, my personality, my people-person self. Most teenagers
"find themselves" in their teen years, but since I've lived such a limited life,
without being able to taste other things, I don't really know who I am. I've
lost part of my real self."
"The losses have been hard," admits
Christina Volkers, who has struggled with CFIDS for nine years. "I've had to
give up going to school, and that also means not being in choir, honor society,
musical performances. If I hadn't gotten sick, I would be singing in school
musicals with my friends. It's hard for me to go and watch the performances
because I want to be part of it so much. I don't feel jealous of the kids, but I
do feel sad that I can't be part of it."
"I think I lost a sense of stability
got sick with CFIDS," says Becky Moore. "Before I got sick I never doubted that
God would take care of me. It never occurred to me that I'd get sick as a
teenager. I just assumed that I would go to medical school, get a practice and
have kids. But now all of that is uncertain. I may not be well enough to go to
medical school. Dealing with the unknown future is the worst part of this
Thirteen-year-old Brooke Volkers misses
being able to be a normal kid. "I couldn't handle gym class at school today, so
I had to sit it out. I could see my friends having a great time. I just had to
sit because the pain was so bad."
Timmy Volkers, who became ill with
when he was five years old, has a growing sense of loss in his life. "When I was
in kindergarten and first grade, I was able to go to school half-days. When I'm
in the hospital with pneumonia, I'm out of school more, and it's hard to go back
to school. I wonder if the kids will tease me or if I'll get sick again. I love
school and get good grades, but it's just hard to get back in with my friends
after I've been so sick. That makes me sad."
Beth Waysek, who has been severely
debilitated by CFIDS for five years, says, "Living with CFIDS is like having my
life taken away, losing the ability to do what I used to, losing the ability to
think clearly. Knowing that I may never get my mind back to where it used to be
is a horrible thought. Relationships with my former friends have changed. They
call me with their problems because I listen, but their problems are so
superficial that I become frustrated. My peers and I are headed in the same
direction, but we are on very different tracks. I don't go to school, so I've
lost that whole life, the academic challenge, the hanging out after school with
friends, the prom, all of it. I've handled my losses with prayer, and that has
helped. I've grieved about the losses; I've cried. But then I decided I had to
accept that my life is different. It's not going to be the same. I'm not like
everyone else. I can't feel bad about it; I have to move on."
"When I was the
sickest, I kept a journal," offers Alisa Vanderzalm. "I wrote about what I was
feeling. I remember screaming into my journal when I finally came to grasp that
this illness may be with me for the rest of my life, that it's not something I
can ignore. Now when I reread the journal, I can see obvious places that I have
"One of the major things that helps
with my illness is my contact with other young people with CFIDS," says Ann
McErleane. "Interacting with other people who share my needs and questions and
feelings through what is now the CFIDS Youth Alliance (see page 12) was a major
turning point for me. I don't know how I could have made it without that base of
"Because I have been unable to read,"
Nancy Masoner, who has been unable to attend school for the past four years. "I
listen to books, magazines and newspapers on tape, and I watch educational
"I try to stay hopeful," says Craig
"Many days I don't even think about my illness, even though I still am quite
debilitated. I have faced the act that I may never recover fully from this
illness, but I don't want to force myself to accept the illness completely. I
want to continue to hope that at some point I will be able to function enough to
go to college, get a job and get married."
What CFIDS Children Need From
When I spoke to the
children, I said, "If you knew that doctors, teachers, friends, friends, parents
and youth-group leaders would listen to you, what would you say to them?" These
are their responses.
- Believe us. Believe that we are sick, even though we may look
fine. Our symptoms wax and wane and we have little control over how we will
feel from day to day. We are not school phobics or hypochondriacs. Don't tell
us the pain and debilitation are not real because you can't see evidence of
our pain on diagnostic tests.
- Trust us. Most of us are responsible, bright, capable
people. Before we got sick, many of us were honor students. Trust that we want
to be excellent students, but we can't. Sometimes our brains fog over, and we
can't remember even simple things.
- Help us trust you. We need to know that you are for us and not
against us. We need to know that you will be there for us. We need to know
that you will not use this illness to punish us or to make an example to
others. Youth-group leaders need to know that we struggle with our faith;
sometimes we question whether life is worth living. Stay involved with us,
even though we may not be able to come to youth-group meetings or
- Try to understand
us. We struggle with a
powerful and complex illness. We won't bore you with all the details of what
we know about our illness, but we need you to try to understand some of the
dynamics of our illness so that when we need to say no to something, you won't
be puzzled that we can't be involved.
- Accept us. We don't expect you to understand us completely;
we don't even understand ourselves sometimes. But accept that we are
debilitated, and help us have as normal a life as possible. Accept that we
will be sick some days and not others. Accept that we will be deeply
discouraged at times.
- Stay with us. We are probably not going to recover tomorrow or
next week or next month. We may not recover next year. Don't let that frighten
you. We are not going to die, but we may have relapses and become quite a bit
sicker. We have come to accept that, and we need you to accept that too.
Commit yourself to stay with us for the long haul. If you are in charge of our
medical care, don't abandon us when you don't have the answers. We would
rather have you cry with us and tell us you don't know what to do than send us
home pretending we'll be better next week.
- Keep in touch. Check in with us and let us hear the school
gossip. When we are housebound, you may be our only link to the normal world.
Call us, even if it's just for a five-minute chat.
- Be our friend. Realize that we aren't always going to be able to
go to a mall or to a movie, but we still have a lot to offer a friendship. In
fact, sometimes kids with CFIDS can offer a deeper relationship because we are
there to talk. Many of us have gone through some pretty rough things. We have
been forced to think about a lot of things, so many of us can offer deep
spiritual awareness and insight into life and others.
- Put up with us. When we are sickest, we can get very crabby. We
don't mean to be crabby, but it takes so much energy to live with this
illness. Remember that most often we are not crabby with you; it's the
- Send us cards, letters or
notes. If we are housebound
or bedridden, communicate with us through the mail or the phone. Send us
encouraging cards. Make us a tape of greetings from friends at school or from
our youth groups at church. Make a videotape of a party or meeting you're
having. Help us stay connected to your world. Leave us messages on our
- Make us laugh. Help us keep perspective by making us laugh. Send
us cartoons or funny videotapes. Tell us the funny things that have happened
in your life.
- Encourage us. Tell us when you think we are doing a good job of
coping with this illness. We can't compete in sports or perform in drama or
music, so we don't have the normal access to affirmation. Let us know that our
strength, perseverance and courage are important to you.
- Pray for us and with
us. More than anything, we
need to know that you stand with us in asking for God's help as we struggle
with all the losses and changes CFIDS brings to our lives. Let us know you
pray for us, and pray with us too.
This article is adapted from Lynn
Vanderzalm's book, Finding Strength in Weakness: Help and Hope for Families
Battling Chronic Fatigue Syndrome.