Becoming a Resilient Family
Living with a bleeding disorder can be stressful for everyone in the family. In today’s busy families, managing every member’s schedule is challenging enough. Complicating this is making time for infusion regimens and treating bleeding episodes.
Families can take some simple steps to help make managing a bleeding disorder less disruptive and less overwhelming. Spending time together, involving all family members in treatment, and having a network of family, friends, and support can lessen much of the anxiety families may face when dealing with a bleeding disorder.
This section of Next Step provides suggestions for:
- Facing the Challenges
Becoming a Resilient Family
Living in a family with a bleeding disorder can be stressful at times. Caring for someone—or in some families more than one person—with a bleeding disorder can disrupt normal family routines. Rather than viewing the responsibilities of caring for someone with a bleeding disorder as an interruption or intrusion, healthy families are more accepting and open to many definitions of what constitutes normal.
Facing the Challenges
Here are some suggestions on how your family can adapt to the challenges of managing a bleeding disorder:
- Have Fun Together as a Family
- Spend time together as a whole family. Family time builds strength and trust, a bond on which to rely in times of stress. You can schedule a simple activity, like a movie or game night at home or a picnic in the park.
- Stick to Your Family Routine
- To preserve the feeling of normalcy and stability, stick to your established family routines and activities as much as possible. Even in the midst of stress, continue to plan events and vacations, accept invitations, visit friends, and arrange play dates. Check out classes offered by your YMCA, attend religious affiliation or local chapter events, and plan regular fun-filled family activities.
- Try to Involve the Whole Family
- Try to include the whole family in caretaking responsibilities. This will help relieve the stress on one person who is taking on too much single-handedly. Smaller tasks can be assigned to children, and as they grow, they will have the confidence to take on more responsibilities. Seek support and help from grandparents and other members of your extended family.
- Hold Family Meetings
- Family meetings are a great way to offer every family member the chance to talk about feelings, upcoming events, changes, and family plans. Children and teens can voice concerns and discuss possible solutions.
- Create an Extended Support Network
- You might be surprised by how willing people are to help. All you need to do is ask! Members of your local hemophilia chapter, religious community, or your neighbors will be pleased to offer a meal, the chance to babysit, or a listening ear. Often, they might not know what to do to help. Tell them exactly what you need. Someday you’ll be able to help them too.
- Take Care of Yourself
- As a parent and caregiver, you must make sure that all of your needs are met before you can meet the needs of others. Take time on your own or with your friends. Join a support or discussion group. Find an enjoyable pastime. Don’t feel guilty or worry that you’re being selfish. Caring for yourself will help relieve stress and give you the positive attitude you need to care for your family.
- Be Aware of What You Say in Front of Your Child
- Try to avoid letting your child overhear conflicts between family members and others, especially when it comes to issues involving your son’s or daughter’s medical care. You want your child to feel that the family and health care providers are on the same page and are a capable and supportive team.
- Stay Organized
- Being organized will lower your family’s overall stress level. Keep all of your child’s medical information, school documents, emergency forms, and other important information in one place. Writing things down will help you remember appointments or questions you have for the health care team.
- For helpful forms and checklists, go to Resources.
- Teach Coping Skills
- Teach your child how to deal with the special challenges of a bleeding disorder. Teach your son or daughter—and his or her siblings—the importance of good communication, making friends, focusing on strengths rather than challenges, and setting goals.
- Be Hopeful
- Stay optimistic as best you can. Each morning, try writing down all the things for which you’re thankful. This simple tool will often help keep you focused on the positive, and it will set a good example for the rest of your family.