Question of the Week
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

  • Jealousy...
  • Anger...
  • Frustration...
  • Resentment...
  • Scared...
  • Embarrassed...
  • Sad...
  • Helpless...
  • Guilt...

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 years."

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?

Please email me with any ideas or suggestions.
Note: Due to increasing amounts of SPAM sent to this account, please include "QOW" in the subject line when sending me email.

I look forward to reading what you have to say.

Health Community Coordinator
Access Excellence @ the National Health Museum

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