How a Support Group May Help in Your IPF Journey
Learning from others helps to face the unknown
When Nick was diagnosed with a rare and severe lung condition called idiopathic pulmonary fibrosis (IPF), his wife of 40 years, Barbara, took on a new role: caregiver. IPF is a disease that gets worse over time. IPF can be challenging to diagnose because its symptoms—such as shortness of breath, a persistent dry cough and fatigue—may also be signs of other respiratory conditions. There is no cure for IPF, though there are approved treatments and other ways to manage this uncommon disease. Because of the serious and unpredictable nature of IPF, patients and their caregivers feel frustrated, hopeless and unsure where to turn for support.
Carol, an IPF support group leader, has seen firsthand the practical and emotional benefits support groups can offer in these situations. “Support groups for those dealing with chronic disease can help people feel stronger and develop a more resilient mindset,” she says.
In Carol’s support group, people with IPF find strength in sharing stories and tips as well as laughter and tears. “Even for people who have a large support network of family and friends, support groups provide opportunities to lean on others in the same position, which provides a different type of understanding,” Carol notes.
“The members of my IPF support group help each other in a variety of ways. Members who attend regularly share their experience and positive attitude with newcomers, reassuring and comforting them,” Carol says. “They also lighten the mood for each other through their senses of humor. A member once told a story about a mishap with a new portable oxygen machine—which then turned into a chance to discuss the transition to using oxygen—often a sensitive topic.”
If you are living with IPF or another serious disease, you are not alone.
Here’s how to locate a support group that can help you find the strength to face your condition:
1. Talk to your care team.
Ask your doctor or other specialist to share any information they have on support groups in your area or online that would be a good fit for you.
2. Seek out advocacy organizations for your condition.
For example, the Pulmonary Fibrosis Foundation (PFF) offers information on local support groups, online groups and social media networks for IPF. There are in-person support groups for IPF and other diseases across the country. However, if there isn’t one you can easily attend, support can also be found online.
3. Explore your options to find what will work best.
Reach out to support group facilitators for more information and visit meetings to make sure it’s a good fit before you commit. Or visit a variety of online support websites or groups to find the people who you feel most connected to. If you don’t have access to an in-person support group, there are ways to connect with others online through communities on social media channels like Facebook or dedicated online patient networks, which can be easily found by doing an online search. PFF also has information about in-person and online support groups here.
There is tremendous power in learning all you can from others who share your journey. Take advantage of the support that’s available to help you, and help others by sharing your story in return.
