Having a child with a chronic illness can be very isolating. However, having a good support network can make a world of difference to your wellbeing and ability to cope.
Friends and extended family are usually the people who provide practical, emotional and sometimes financial support during times of stress. Religion or spiritual beliefs can also be a very important source of support.
Although friends and extended family offer support, relationships with them can become strained when your child is ill. For example, people may give you advice that you have not asked for and ask more questions than you are willing or able to answer. On the other hand, you might find it difficult to repeatedly ask for help with child care or rides to the hospital.
You also know that your friends and family have their own lives to deal with and may feel like you are bothering them. Relationships can start to feel a bit one-sided and you may feel like you are taking more than you are giving.
How to get the support you need
If you feel that your relationships are suffering, talk about it with the family member or friend and see how they feel about it. Remember too that we all give and receive support at different times in our lives. When your child’s medical situation is more stable, you will be able to offer to help the people who are helping you now.
Ideas from other parents
One parent said:
“When my daughter was first diagnosed, lots of people said ‘If there’s anything I can do, let me know.’ I didn’t know what to say or what to ask for. I’m smarter now: when she’s sick and someone says that, I say, ‘Thank you! Do you think you could take care of my younger daughter on Saturday?’ or ‘That would be great! I’d really appreciate it if you could pick up some groceries and drop them off at my place.’ Then I give them a short grocery list. I’ve realized that I have to be very specific, and people have learned not to offer if they don’t want to help.”
Another parent spoke of changes in their social circle.
“I have lost some friends and made some new ones as I realize that some people can handle a friend talking about their sick child, and some people can’t. I try to only be around people who make things easier for me, not harder.”
For some parents, immediate family have helped them the most.
“We could not have gotten through transplant without the help of my husband’s parents. They took care of our other children and our dog, they were always there when I needed a shoulder to cry on and they even offered us some money when things were really tight. We felt so grateful, but we also felt like we could never pay them back for what they had done. We decided to take a picture of our family holding a big sign that said “Thank you Nona and Bubba”. We framed the picture and wrote a letter from the heart for them. They loved it, and even though it didn’t really pay them back, they know how grateful we are for their support.”
Further information
For more information on the impact of an organ transplant, please see the following pages.
Impact of a transplant on your child
Impact of a transplant on siblings