Living with a bleeding disorder is a lot to manage on your own. It’s beneficial to surround yourself with people to support you — including family, friends, peer communities, and health care providers.
“A support network has the potential to decrease the feeling of being alone, through connection with other patients who have the same diagnosis. A support network also can decrease the risk of depression and isolation and some mental health diagnoses,” says Bryn Dunham, a licensed clinical social worker at the Hemophilia and Thrombosis Center at the University of Colorado Anschutz Medical Campus.
In her work with patients and their families, Dunham refers to these various areas of support as communities. “Communities are built into our world,” she says, though she acknowledges that we need to put effort into finding them.
“Trying to reconnect with those communities to provide emotional support, companionship, or a physical outlet is key,” she says.
So, where do you find support networks or communities to help you navigate your bleeding disorder? Dunham suggests these six groups:
Family and Close Friends
“Usually, support networks start with family,” Dunham says. “I use the term family to mean a lot of people, not necessarily any sort of genetic connection.” This is a good thing, as having more family equates to more people looking out for you as you manage your bleeding disorder.
“Consider family that you have connected with well, that are good friends potentially, or at least that may have an open mind,” she says. “Try to figure out who you think you would be comfortable approaching. If a person has been supportive or helpful in a previous scenario, there’s a greater chance that they may be as well in this scenario.”
If you have family you know to be negative or unhelpful, don’t feel obligated to include them in your support network.
Health Care Providers
Having a comfortable, trusting relationship with a provider is crucial for support. “Not just medical providers but nurses, physical therapists, genetic counselors, social workers, and research associates,” Dunham says.
Many of these professionals can be found at a hemophilia treatment center (HTC), part of a national network that provides comprehensive care for people with bleeding disorders in one convenient location.
“We want our HTC to be part of your support network,” Dunham says. “It largely comes from relationship-building and connection points that we have, either in person, by phone, or by any of the electronic platforms.”
Support Groups and Communities
Support groups can be a safe space for sharing your experiences and hearing from others in a similar situation, whether it’s for a specific bleeding disorder, chronic pain, caregiving, or family changes.
People of faith can lean on their house of worship. “Connection with a church, for example, can help a patient draw on their beliefs and filter what they’re dealing with through a sieve of something that’s very important to them,” Dunham says. “It eases the suffering that can come from learning more about your bleeding disorder and coming to terms with all that it encompasses.”
Outside of dedicated groups, your support community can include people who may not be family or friends but can still be there when you need it.
“I had a patient that’s elderly and needing some help,” Dunham says, “and he called and said, ‘You know, I’ve got a great neighbor that actually can navigate some of this computer work that I need to do to access Medicare.’ Those neighbors are part of a community.”
Mental Health Professionals
People with chronic diseases are more likely to struggle with mental health, so you might benefit from having a psychologist, psychiatrist, counselor, or social worker in your support network.
For help in finding this support, “I’d certainly recommend social workers at the HTCs as good beginning points,” Dunham says.
If you are having thoughts of harming yourself or others, call, text, or chat the 988 Suicide & Crisis Lifeline.
Patient Advocacy Organizations
Groups such as the National Bleeding Disorders Foundation (NBDF) exist to help people with bleeding disorders and could be part of your support network. They have quite the track record of advocacy efforts, too. If there is an NBDF chapter nearby, you can find programs to connect you with others in the local bleeding disorders community.
“I always tell families to take a deep breath and jump into the bleeding disorders community. And there are numerous ways to do that, including joining webcasts, listening to a speaker, or joining an introductory class,” Dunham says.
“Just try it,” she adds. “If it’s not your thing, that’s fine. But give it a try.”
People You Enjoy Being Around
As you build your support network, think beyond your bleeding disorder. People who share a hobby with you can be a welcome diversion and help you in that way.
“We don’t always realize where we get support,” Dunham says. “When you use the word support, I find that patients and families directly go to: OK, who am I going to tell all of my worries to? or Who am I going to tell everything about my diagnosis with? I challenge that and try to present it as: Who are people that enjoy the same things that you enjoy? Who are people that you’re acquainted with on a regular basis?”
Dunham shares an example that she sees a lot in Colorado. “People have hiking buddies and kayaking and bicycling groups,” she explains. “Those kinds of things can also be supportive, even if they’re just taking your mind off of something that is overwhelming.”