Stress. No one wants it, but everyone has it. And when you add a chronic illness like a bleeding disorder, that can exacerbate symptoms, says Peg Geary, MA, MPH, a clinical hemophilia social worker/researcher at New England Hemophilia Center at UMass Memorial Medical Center in Worcester.
When left unchecked, stress can affect a person’s thoughts, feelings, behavior and body. It can cause everything from headaches and fatigue to anxiety and social withdrawal, according to the Mayo Clinic. Stress also can result in physical symptoms and/or behaviors that are not usual for the adult or child involved.
You’ll be glad to know, however, that families who deal with hemophilia or another bleeding disorder are often better at managing stress than others, says Geary.
They have lots of resources and a ready staff at experts at their local hemophilia treatment center (HTC). “They develop a variety of coping mechanisms, like pulling in family support,” Geary explains. Many families normalize hemophilia and convey a positive attitude, she adds. “If parents can accept hemophilia, and make it part of their life routine, they set a good example for their kids.” But even if you have basic coping skills, you can learn more. Read on for Geary’s tips.
Tune in to your children. “A little bit of stress is normal, like when your child is nervous about a test the next day, or if you’re meeting new people,” says Geary. The trick is to recognize when normal stress balloons into a bigger issue. Sometimes kids feel overwhelmed or upset, and won’t talk about it. Maybe your child is anxious because he or she can’t play contact sports and everyone else can, says Geary. She notes that being different is a big stressor for children. But you can pick up on subtle cues if you pay attention. “You know your child better than everyone else, and you know when something is wrong,” says Geary. If you see changes in your child’s behavior, like increased anger or other signs of stress, take note.
Suggest a talk, but don’t go overboard. If you notice a problem, try to engage your kids in a nonthreatening way, advises Geary. You can gently ask if anything is bothering them. “But don’t try to force your kid to talk,” she says. “Just see if the issue comes up in conversation.” If it does, you can lead the chat by giving examples of how you coped with a stressful situation when you were young, Geary says. Then listen and help your child develop a solution.
Protect your kids and help them help themselves. It’s tempting to comfort your kids about every hiccup, but it may not be the best thing for your child, Geary warns. “You can protect kids so much that they don’t develop their own coping skills,” she says. Then when they enter adulthood, they don’t know how to deal with stress and pressure.” So let them study for that exam, and work through their anxiety partly on their own. Then validate their feelings and confirm that some stress is normal, but they can handle it. That’s how they will grow into independent adults.
Maintain balance. It’s hard to see your kids feeling anxious, but don’t amplify issues unnecessarily. If you do, your kids will follow your lead—and you don’t want them more on edge, says Geary. If you’re feeling stressed, try to resolve the issue using your own coping skills. You can still tell your teenager, for instance, that you’re concerned about him self-infusing on that camping trip. But try to process your feelings before you help your children process their own. “If parents can normalize stress, and deal with it, kids will hopefully follow their lead. Remember that you’re the role model,” Geary says.
Try new remedies. Through social networking you may hear about other coping techniques, says Geary. Stress journals, which let you record your feelings in a safe place, can help some families. Mindfulness training, during which you fully focus on the present moment, can help relieve stress. Physical techniques, such as deep breathing, meditation and yoga, also can help. And remember the importance of sticking to a healthy diet and getting adequate sleep. Because everyone responds to stress differently, a certain technique may help some people more than others. So try more than one.
Get professional help when needed. Sometimes little stressors become big issues, even when you’re trying to cope. If periods of stress stretch from days to weeks, you may need to seek help. Also reach out if you or a loved one feel so overwhelmed that going to school or work is difficult. And if family members are thinking about hurting themselves—or if you are—talk to a trusted social worker, counselor or other professional, Geary advises.
“If you’re involved with an HTC, that’s where you should turn first,” Geary advises. There you’ll find staff who know you and your
family. And a physician or social worker can quickly direct you to helpful resources.