The Rights and Needs of Young
Originally published in Youth Allied By
CFIDS, Winter 1997
Believe in the child. Do not doubt
the reality of the illness. When so many falter, question, and lose faith, it is
all the more important that you show unfailing support.
Understand the child . Learn about the illness and what to expect from
it. Be patient with frustrating cognitive, concentration, and memory
difficulties - understand that they confuse and frustrate the young patient even
Listen to the child . Listen to what his or her limitations may be and
how he or she feels. Do not push children with CFIDS. Listen to what they want
Do not belittle . CFIDS is more than "just" tired. Do not belittle
the condition. In doing so you belittle young patients and what they feel. They
know how they feel.
Be patient . CFIDS can last for months and years. It
is not the
fault of the child that he or she is "still" sick. Constant reminders and
innuendoes of failure hurt. No one "wants" to stay sick.
Be encouraging and help the child to see the positive when things
get rough. Hold children with CFIDS up as they learn to navigate the rocky road
Be fair . The child with CFIDS is the same child that
knew before. Let children with CFIDS be as normal as possible; do not treat them
as "different." Encourage normalcy.
Be flexible . CFIDS is unpredictable; plans cannot be
stone. Do not make the child feel guilty for cancellations - missing out is hard
for him or her. Continue to include young CFIDS patients in events whenever
See the child as
a whole person despite the
illness. Learn to look past
physical limitations. Children with CFIDS are no less interesting or interested
people. Interact and do not allow isolation.
Help others to understand as
well. Reach out to friends, family
members, schools, etc. and explain. Keep the child in touch with the world - he
or she does not want to feel strange and different.
Be open . CFIDS is not a shameful secret.
Do not accuse or persecute . The child should not be made to feel defensive
having an illness and should not have to explain him or herself.
Support the child every step of the