All moms and dads will admit, even if only to themselves, that parenthood is stressful.
But what stresses one parent doesn’t necessarily bother another. And because the problems aren’t precisely the same, neither are the solutions.
This is perhaps especially true for parenting a child with a bleeding disorder. Managing a chronic disease with potentially life-threatening complications adds a thick layer of complexity to childcare, heightening not only the pressure but also the potential for burnout.
“There’s already the stress of becoming a parent, wondering whether you’re doing everything right, and thinking that you don’t know what you’re supposed to be doing. Adding a bleeding disorder diagnosis to that can be overwhelming,” says Betsy Boegeman, MSW, LICSW, a hematology clinical social worker at the Children’s Minnesota Center for Bleeding and Clotting Disorders in Minneapolis.
Like anyone experiencing profound change, parents whose children are diagnosed with bleeding disorders “need time to adjust to a new normal,” Boegeman adds. “But having a bleeding disorder is just one of the many aspects of who your child is as a whole person. You just have to learn as much as you can, take what’s helpful, leave what’s not, and figure it out as you go.”
That’s easier said than done — and parents quickly learn that they need to take care of themselves in the process, too.
Caregiving Side Effects: Headaches, Digestive Disorders, and More
Being a full-time caregiver can take a severe toll on a person’s physical and emotional health.
Chronic stress releases a cascade of hormones such as cortisol and adrenaline that can lead to irritability, headaches, digestive problems, and a weakened immune system.
Those side effects inhibit a person’s ability to care for someone else. To help avoid them, experts suggest keeping the following tips in mind:
- Check yourself for signs of burnout. Symptoms can include fatigue, sleeping problems, feeling overwhelmed or anxious, unexplained aches and pains, weight gain, frequent illness, and social isolation. Ask yourself:
- Am I always moody?
- Are my comments routinely short and snappy?
- Can I get everything done, or are many tasks left unfinished because I simply can’t handle the load?
- Take occasional breaks. Even going for a walk or having a cup of coffee can help. Add in lunch with friends, a night out, or a movie.
- Don’t beat yourself up. It’s normal for caregivers to feel angry and resentful about their responsibilities sometimes — and to feel guilty for those feelings. Try to avoid berating yourself.
- Whether you prefer vigorous running and weightlifting or calming activities such as yoga and tai chi, physical activity helps counter the negative effects of stress.
- Seek professional help. Talking with a counselor or social worker can help you marshal your strength and learn ways to cope better with your fears, worries, and challenges.
- Among the best ways to counter burnout is seeking the support of other people, especially those facing similar challenges. You may be able to connect with parents of children with bleeding disorders through your hemophilia treatment center or on social media.
Building relationships with peers is invaluable to caregivers, says Michael Viscariello, LCSW, a clinical social worker at the Hemostasis and Thrombosis Center at Children’s Hospital Los Angeles.
Read More: How Parents of Children with Bleeding Disorders Can Adapt to Changing Roles
Voices of Experience
For many parents, talking with another mom or dad “who is currently having the same struggles or has had them in the past and being able to discuss what it was like for them is some of the best support they can get,” Viscariello says.
Sharing experiences and improvising solutions can help caregivers navigate stress that, while constant, is also constantly changing.
Because while their child’s diagnosis heralded one new normal, there will be many more — both with the child as a whole person and with the child’s bleeding disorder, Boegeman explains. Each one comes with questions, new learning, and perhaps feelings of confusion and inadequacy.
One early consideration, for example, is learning to give clotting factor infusions. While it’s not uncommon for one parent to have a needle phobia that makes infusing a child more difficult, treatments are easier if both parents learn to provide them, ensuring that a backup is available.
Eventually, children with bleeding disorders will need to learn to infuse themselves, though the age when they do so varies. Some want to start as early as elementary school; others wait until they’re older and want to spend the night away from home for the first time.
Steps for Living, an educational resource developed by the National Bleeding Disorders Foundation, offers guidelines for parents trying to figure out the appropriate timing for skills development.
Complications and emotional concerns manifest differently for each family, Boegeman says.
“Some parents stress over wanting their kids to self-infuse so that they can be independent and successful,” she explains. “Others feel bad that their children have to inject themselves and stress over teaching their kids to do that. And others are stressed about giving up some control and letting kids infuse themselves because they feel like the kids won’t need them anymore.”
Focusing on the Now
Another ongoing dilemma is deciding which types of activities and sports are safe for children with bleeding disorders, and it’s one that can benefit from planning ahead. Steps for Living offers a brochure that can help parents evaluate risks.
Ice skating and flag football, for instance, may pose relatively low risks for young children whose bodies are smaller, but these sports can grow increasingly dangerous as kids mature.
“Some parents decide that they’ll wait to address an activity until it becomes unsafe, but it can be really hard to tell a child that a sport like hockey or football is no longer safe once it has become part of their identity,” Boegeman says. “That leaves parents weighing, ‘Do I let my child continue in this sport because it makes them happy, or do I pull them?’ At that point, some of them think it would have been easier if they had never started down that particular path.”
The situation grows even thornier when parents have other children without bleeding disorders who can engage safely in sports and activities that their siblings cannot. “How do you decide fairly who can do what?” Boegeman asks. “That’s a heavy responsibility for parents to face.”
While preparing for such possibilities is helpful, it’s also important that caregivers prioritize so that they’re not taking on too much at once, she and Viscariello agree.
“It’s easy for families to start thinking too far ahead trying to ensure that their child can have a normal life,” Viscariello says. “I try to encourage them to focus on the now and take things as they come.