Developing a Support Network
Taking care of a child with a bleeding disorder may eventually become a routine part of your life. However, many parents of children with bleeding disorders are undeniably strained by the demands of caring for their child, the needs of their families, and other daily pressures.
Parents may neglect their own needs, especially when a child's medical needs are more urgent. The time demands of managing a child's bleeding disorder often make it difficult—and sometimes impossible—for parents to engage in social activities, which can lead to feelings of isolation.
The first step in taking care of a child with a bleeding disorder is taking care of yourself.
It is important not to neglect your own needs in your effort to give your child with hemophilia the best care you can. It may take some effort not to shut out other people, especially when you are focused on your child at a critical time. It is true that most people may not understand the stress of having a child with medical problems. However, most people are willing to learn. Many people want to offer support but are not sure how to do it. Talk to them. Building relationships means sharing rough times as well as good times. Good communication and the sharing of feelings is what closeness is all about. All parents need to set aside some time away from children, even if just for a brief walk. If you are a single parent of a child with hemophilia, try to set aside time each week to spend socially with other adults.
—Brown R., Cornett J. The Hemophilia Handbook, Fourth Edition, June 2002. pp. 247 Notes to Parents of Children with Hemophilia; You, the Parents.
Here are some tips to help you take care of yourself:
- Engage in social activities
- Bond with the parents of other children with bleeding disorders. This can be one of the most critical steps in moving forward after a new diagnosis. No one understands your situation more than a parent who has had the same experience
- Find a balance
- Caring for a child with a chronic condition can become all-consuming. It is important to make time for other family and friends and to continue with activities that interest you and are enjoyable
- Set limits
- Know what your limits are before you start feeling burnt-out. Find ways to take a step back when you need to recharge your batteries
- Take care of your own health
- Find ways to relieve stress
Siblings of Children With Bleeding Disorders
As a parent of a child with a bleeding disorder much of your focus, attention, and time are drawn to the child with the bleeding disorder. However, it is essential for the whole family that you make time for other children as well.
When talking to the siblings of a child with a bleeding disorder about their brother's/sister's diagnosis, be mindful of the child's developmental stage. All the siblings may not be able to understand the same explanation about the bleeding disorder. Spend time with each of your children, and tailor what you say and how you say it to the child's age and his or her specific questions.
Parents may find it difficult to predict how siblings will cope with a brother's or sister's disorder. Regardless of their reaction, spend time with them and discuss age-appropriate information on hemophilia and bleeding disorders. Setting aside time for talking can help children build coping skills and know that their feelings are acceptable.
Here are some tips for what to say when talking with siblings:
- Recognize and acknowledge their feelings: You seem upset. Or You seem sad. Or You seem angry
- Validate their feelings: It's okay to feel that way. This has been hard on you, hasn't it?
- Show empathy: I'm sorry. I'll bet that feels terrible. That must be hard for you
- Share your feelings, both positive and negative: I feel that way sometimes too
Siblings may be asked about their brother's or sister's bleeding disorder by their friends or classmates.
Here is a simple answer that a sibling might use:
To print out a copy of this sample, Explanation of a Sibling's Bleeding Disorder, click icon:
Find Your Silver Lining
Managing a bleeding disorder impacts you and the lives of those you love. It may seem overwhelming at times but managing a bleeding disorder can also bring opportunities for building confidence and strengthening relationships.
In this video, you’ll hear the personal experiences of those who have not only met the challenges of managing a bleeding disorder but have reaped the benefits of a positive outlook.