Why I Love to See Brothers and Sisters at Family Camp!
Horizons in Hemophilia, July 2015
By Cathy Hulbert, LCSW, Social Worker
“I wish that I had hemophilia, too.”
What would you do if your child without the diagnosis said that to you? It is actually spoken – and silently thought -- more often than you might think. Parents sometimes react with shock or anger. That’s understandable from an adult perspective. But kids have a different way of seeing things.
They often feel impacted by the bleeding disorder too, but in ways that they can’t articulate. That’s why I love Hemophilia of Georgia’s spring and fall family camps and other events that include siblings. One of the best ways to support a child or teen with a bleeding disorder is to support the people closest to them.
As a social worker, I often bring up the subject of brothers and sisters and how they cope with the extra demands put on parents when there is a hemophilia diagnosis in the family. It’s really important that my timing is good. I don’t want to further overwhelm a parent who is dealing with overwhelming stress.
Mothers, fathers and other caregivers often let me know that everything seems fine. This is particularly true if there are few complications such as hospitalizations or surgeries, or if there are few family arguments regarding such things as the need for prophylaxis or learning to self-infuse.
Other times, though, parents react with surprise and relief when I bring up the subject.
“I wanted to talk to you about that but didn’t know if we should only talk about the child with the bleeding disorder,” a parent might say. I hear that quite a bit.
Don’t hold back if the need is there. This can be a great conversation to have with your HoG social worker or the social worker at your Hemophilia Treatment Center. One conversation might be all that you want. If need be, we can refer you to a counselor who can address the issue more thoroughly from your family’s unique perspective. Perhaps there are many things challenging your family, not just the bleeding disorder! When a crisis happens to one family member, it happens to everyone in the family.
Those of us trained to help know that children don’t always understand their feelings or their actions. The need to compete for attention or express their frustration can play out in ways that exasperate parents. This can include being immature for their age, getting in trouble at school, not wanting to attend school or acting openly resentful toward the brother or sister with a bleeding disorder.
And parents are not the only ones who can feel guilt about all of this. The sibling who feels resentful can also feel guilty about that. Sometimes just airing out those feelings without getting in trouble can be a big part of the solution. We hope that you will let us know if we can help with that conversation. And in the meantime, please enjoy our family activities. Just being included can work wonders.
Here are two great links that provide further insights and information about the sibling experience:
https://www.stepsforliving.hemophilia.org/next-step/family-life/siblings