The Challenges of Parenting a
Child with CFIDS
Originally published in The
CFIDS Chronicle, Winter 1996
A friend asked me, "Lynn,
what is harder for you: having CFIDS yourself or being the mother of a child
Without needing to think about my response,
I answered, "It's much more painful to watch Alisa struggle with CFIDS than it
is to battle my own symptoms, despite the fact that at times I have been 80
While coping with the pain and confusion of
CFIDS - not to mention the physical, emotional and relational losses - is
difficult for us as adults, it is even tougher for children. Our daughter,
Alisa, was nine when she first became ill with CFIDS. Now, almost eight years
later, she has been sick nearly half of her life. Last year we faced our most
difficult year with her CFIDS. In addition to the imbalances in her immune,
neurological and endocrine systems and her sleep/wake cycle, her body also
developed a chemical imbalance that caused depression. Already exhausted from
fighting CFIDS for years, she has no emotional energy to cope with all of these
challenges. The depression became so severe that one night she took an overdose
of medication, hoping to end her struggle.
In Finding Strength in Weakness: Help
and Hope for Families Battling Chronic Fatigue Syndrome*, I wrote that the
only fatal symptom of CFIDS is suicide. When I wrote that sentence, I wrote it
as information. Now I know it as reality. For Alisa and our family, CFIDS has
become a life-threatening illness.
My husband and I grieve as we watch Alisa
lose critical stages of her life. We are pained to see her navigate the
treacherous waters of adolescence without the physical health or stamina to
maintain equilibrium. We agonize as we see her, some days too sick to even enjoy
a phone call from a friend. We grieve as she looks to her future and sees her
We are not alone. Those of us who are
parents of children with CFIDS feel the heartache as we watch our children fight
pain and exhaustion when they should be fighting their opponents on a sports
field. We see them crippled by illness when they should be bouncing through the
carefree days of childhood. We see their minds hampered by brain fog when they
should be sharpened in classrooms with their peers. We see them confined to beds
and couches when they should be developing their self-esteem on the stage, in
groups or in leadership positions. We see them struggle with friendships when
peer relationships are so important for their growth. We see them dependent on
us when they should be trying out their wings.
As the years pass, we grieve that our
children are not getting better and we face the grim reality that they may never
fully recover. We grieve deeply when they go into relapses. We grieve our own
But gradually we must come to a point of
acceptance. This is the way life will be, and we must make the best of it. We
make the necessary changes and commit ourselves to our children's wholeness in
the midst of a broken situation. In doing so, we model for our children how to
face adversity and how to integrate the illness into our lives.
As we attempt to be effective parents of
our children who have CFIDS, we can give them several gifts: our trust, our
support and encouragement, our love, our commitment to their growth, our
commitment to bring balance to their lives and our commitment to protect and
advocate for them.
- Trust your child.
Because I carry CFIDS in my body, it was easy for me to trust Alisa when she
reported strange symptoms which seemed to wax and wane from day to day and
even hour to hour. I knew what she was feeling. I have great respect for the
parents who do not have that firsthand experience. The unusual dynamics of
CFIDS can be very frustrating for parents if they don't know their children
and if they don't know the effects of CFIDS. It's imperative for parents to
read reliable information about CFIDS, especially as it relates to children.
Trust is also important as CFIDS children get older and make more of their own
decisions about school, activity level, treatment and relationships. In his
book The Doctor's Guide to Chronic Fatigue Syndrome, Dr. David Bell says, "The
family struggling with CFIDS must function well. There needs to be good
communication between parent and child, appropriate behavior control and above
- Encourage and support your
child. "The best gift I can give my child with CFIDS is summarized in
three words: encourage, encourage, encourage," says Sharon, a PWC whose
daughter also has CFIDS. "That means I try to understand her, empathize with
her, let my anger go. That means I accept her for who she is right now, not
for what she could have been without CFIDS. That means I give her my time, my
hugs and other expressions of love. That means I do special things for her and
praise her for even the little things."
- Guard your child's
self-esteem. "Children with CFIDS have to endure a lot, not only
physically but also emotionally as they face doubt and insensitivity from
other people," says Cyndi, a PWC whose five children also have CFIDS. "When
Mandy was hospitalized at a pain center, several neurologists who worked on
her case did not believe CFIDS was a valid diagnosis and their disbelief
showed in their attitudes. They said some devastating things in front of
Mandy. I confronted them, but they didn't stop. Finally I made sure that her
medical charts stated that no doctor could discuss his or her feelings about
CFIDS in front of Mandy. That was the last thing she needed as she fought
unbearable head pain and seizures for weeks."
- Commit to your child's
growth. One family's commitment to their child's growth expressed
itself in their choice to drive a 40-mile round trip and pay full tuition at a
private Christian school so that their son, who has CFIDS, could attend a few
classes there because that's where his social network was, that's where his
learning disabilities were accepted, and that's where he could find wholeness.
- Compensate for the
losses. One of the significant ways my husband, Bas, and I have
committed ourselves to Alisa's growth during her years of CFIDS is by
compensating for the things she has lost. As parents, we are the guardians of
our child's whole person - not only her physical well-being, but also her
emotional, relational, mental and spiritual well-being. Our goal is to keep a
balance in her life. When CFIDS robbed Alisa of her ability to take drama
classes and be involved in drama clubs, we worked to balance that loss by
renting videos of classic dramas, getting videotapes of her school's drama
performances and trying to take her to a few major theatrical productions.
That wasn't easy. We would rest up for days ahead of time so that we could sit
through a three-hour performance of Les Miserables, then we would crash for
days afterward. Alisa will tell you we almost cried when the theater elevator
was not working and we had to climb four flights of stairs to get to our seats
at The Secret Garden on her 14th birthday. She was so nauseous we thought she
was going to lose her food several times. We can laugh about it now - well,
almost - but then we thought we weren't going to make it. But 10 years from
now Alisa will remember the magic of the drama production and music, and we
hope she will forget how sick she was.
- Advocate for your child.
One of the major gifts we can give our children with CFIDS is to
advocate for their needs. Advocacy means representing them, explaining their
situation and, if necessary, fighting for their rights with the medical
community, the school district and school personnel, as well as friends and
A parent who has done extensive work as an
educational advocate for children with CFIDS is Karen Lang. Karen, who also has
CFIDS, began her work as an advocate for her son, Calen. She writes about their
family's experience with the educational system in "Calen's Story: A Child's
Journey Through CFIDS," in the Winter 1994 issue of The CFIDS Chronicle. (This
article and other helpful information is available in the Association's "CFIDS
in Children" packet; see item 6020 on page 64.)
Karen shares several suggestions for
parents working with school districts on behalf of their children with CFIDS.
"Approach the district with an attitude of cooperation but with the knowledge
that your CFIDS child is entitled to special services under Section 504 of
Public Law 94-142."
If your child has CFIDS, your job as a
parent takes on new dimensions. Learn all you can about the illness. Find other
parents who can encourage you when you are sure you can't do this another day.
Give your children all the love and support you can as they navigate the
treacherous waters of life with a debilitating, frustrating and frightening
illness. Advocate where you can, and confront when you must. Hang in there. Your
child needs you.
If your child despairs of life and becomes
suicidal, enlist all the help you can. Find immediate support from psychiatrists
and counselors who will help your child deal with the immediate losses he or she
faces. Keep yourself emotionally and spiritually healthy. Lean on your friends,
your family and your faith. We are happy to say that God spared Alisa's life,
but her battle is not over. Neither is ours. And neither is yours. May God give
you strength in weakness.
*This article is adapted from Lynn
Vanderzalm's book, Finding Strength in Weakness: Help and Hope for Families
Battling Chronic Fatigue Syndrome.