February 1, 2005
When people think of chronic pain or chronic illnesses, they often
think of adults.
"* Each day, 46
children are diagnosed with cancer
* One in 330 children will develop cancer by age 20"
Cancer is not the only
chronic illness that is faced by children and teens.
"Chronic ... This
word refers to an illness that a person has
for a long time or an illness that goes away and keeps coming
back. Diabetes and juvenile rheumatoid arthritis are examples
of chronic illnesses."
... When one person in
a family faces a chronic illness, the whole family faces it together.
No one will argue that living with a chronic illness changes the
life of the person who has been diagnosed, but what about when
a child is diagnosed? What impact does this have on the family
as a whole?
"Only at the beginning
of the early 80s the complete family became the centre of the
interest in psychological oncology, up till then the ill child
had been in the centre of interest. We all know that chronic childhood
illnesses, such as cancer, create enormous stress on all family
members. But the worst thing is, that siblings of ill children
are often overlooked. A common meaning is that a parent feels
the immediate emotional and psychological pain twice; once for
their ill child and once for themselves. But the sibling of a
child with cancer is assaulted with this pain even on three fronts:
they hurt for their ill brother or sister, they hurt for their
grieving mother and father, and they hurt for themselves."
Again, these feelings
are not specific to the sibling of a child with cancer. Being
the sibling of a child with any chronic illness can be difficult.
"What is it like
to be the sibling of a child with a chronic illness? Reactions
and experiences can be as unique as your child, but studies of
siblings suggest some common
It's important to remember that these
are common and completely normal responses for siblings to have.
Problems arise when these feelings persist and interfere in siblings'
everyday life and functioning."
It is important to remember that "chronic
illness" does not just
include life threatening illnesses, or those that create physical
disabilities. Any illness can be life-changing, and chronic illnesses
last a lifetime.
"Being the brother or sister
of a person with autism does not end with childhood. These are
lifetime relationships that mature and grow over the years. The
concerns of an adult sibling will be different from those of children.
For the young adult, questions may focus on their own plans to
have children and concern about whether there is a genetic component
in the autism of their sibling. In some cases, young adults may
also feel a keen sense of responsibility for their brother or
sister with autism that makes it difficult for them to leave home
and begin an independent life."
Sometimes it is a sense of responsibility
for one who is chronically ill; sometimes it is simply the great
love of one sibling for another. However you look at it, siblings
are siblings--no matter how young or old.
"New York, NY, July 3, 2002 ...
National Basketball Association center Greg Ostertag, 29, of the
Utah Jazz was released from Baylor University Medical Center in
Dallas on Sunday afternoon, just three days after undergoing surgery
to donate a kidney to his younger sister, Amy Hall, 26, who has
had type 1 diabetes since she was 7 and for the last three years
has suffered the consequences of rapidly-worsening diabetic kidney
disease. ... In an brother-sister interview last month, Hall said
that when she first phoned her brother about the transplant, he
agreed instantly: 'From day one, he's been gung-ho....He never
thought twice about it, never looked back, never said, "I
shouldn't be doing this because it could mess up my career."
When he heard the news that we were a perfect match, he said,
"Tell me what I need to do."'
"'I'm not trying to be a hero,' Ostertag, who is married
and the father of three, said. 'I'm just trying to be a brother.'"
Juvenile Diabetes Research Foundation
With that said, "It's important
to remember that a lot of factors affect how siblings relate to
each other, and not just the fact that one of them has a disability.
However, sometimes having a brother or sister with a disability
in the family creates challenges that other families may not experience.
Some of these challenges can directly affect the siblings....
In any family, good or unfavorable feelings may develop between
siblings or because of siblings. This is true in both families
with and without a family member with a disability. But many siblings
who have a brother or sister with a disability have reported concerns
surrounding having a brother or sister with a disability."
In addition, "It is important
to remember that while having a sibling with autism or any other
disability is a challenge to a child, it is not an insurmountable
obstacle. Most children handle the challenge effectively, and
many of them respond with love, grace and humor far beyond their
As siblings show "love, grace
and humor far beyond their years," it can be easy to forget
that this chronic illness has changed their life, as well. Sometimes
the sibling is the one who learns to play in a new way so that
s/he can have a relationship with that brother or sister who is
dealing with a new illness. Sometimes parents look to these children
for strength. Whatever the change -- or the challenge -- a sibling
may be dealing with, hospitals and support groups are remembering
the sibling more and more.
"The Sibling Support Project,
believing that disabilities, illness, and mental health issues
affect the lives of all family members, seeks to increase the
peer support and
information opportunities for brothers and sisters of people with
special needs and to increase parents' and providers' understanding
of sibling issues."
You may or may not know if you have
a person in your classes or school who is living with a chronic
illness. Statistically speaking, chances are that you do, and
chances are that you also have those in your school who are living
as the siblings of those with a chronic illness.
Questions of the Week:
How can (and should) the health care community support the needs
of the siblings of patients, as well as the patients themselves
and their parents? How are the needs of those living with a chronic
illness different from the needs of their siblings and family?
For the patients or siblings who don't want people to know and/or
don't want to be treated differently, how can communities and
individuals offer assistance while respecting their wishes and
their privacy? How can you support a friend, or even a family
in your neighborhood, whose life has been changed by a child with
a chronic illness? How would the support you offer to a friend
differ from what you could offer to an acquaintance or a neighbor?
If you have experience with a chronic illness (either as a patient,
sibling, or child of a patient), how could you use your experiences
to help others?