Women living with interstitial lung disease (ILD) face a unique set of challenges. Besides learning to manage a chronic condition, they also have to learn to balance additional caregiving roles with their emotional wellbeing. “We see it every day,” says Jennifer Wesco, founder of the Wescoe Foundation. “Women are so used to being the fixers, the ones who hold everything together. When they’re the ones who need support, it can be incredibly hard to ask for it.”
ILD is not a single disease, but a group of more than 200 lung disorders that cause inflammation and/or scarring of the lung tissue surrounding the alveoli or air sacs. ILD is different for everyone, so symptoms and treatments vary, but Jennifer has seen firsthand the social and emotional toll a chronic condition takes on those living with it and their families.
The Wescoe Foundation specializes in supporting those with ILD, so as founder, Jennifer understands the important role of support groups and how sharing stories can address the social and emotional needs of women living with an ILD.
A Foundation Built on Loss and Advocacy
Unfortunately, a delayed diagnosis is common with many ILDs and can result in irreversible lung damage, especially with the most common type, idiopathic pulmonary disease (IPF). This was the case for Jennifer’s father who, after years of struggling to breathe and several misdiagnoses, was told he had idiopathic pulmonary fibrosis in 2003.
“It took more than three years to get a correct diagnosis. And for us, as his family, the resources and support felt non-existent,” Jennifer explained. Unfortunately, he would pass away only 11 months later. But this experience became the driving force behind Jennifer launching the Wescoe Foundation which, for the last 20 years, has made it their mission to help patients with ILD and their families find the information and community they need as they navigate and advocate for themselves while living with an ILD.
Addressing Unmet Needs Through Support Groups
Living with a chronic lung disease doesn’t just affect your body; it also changes relationships; your identity and the way you live day to day. Anxiety and depression are more common in people living with chronic lung disease than those without. Support groups can provide a space to discuss the emotional and social challenges that come with managing chronic lung disease, all while balancing a home, career and keeping a family running.
By attending support groups, women can learn from each other, share stories and through these interactions, they often feel more validated. “Women will ignore what they’re going through physically and emotionally because they’re used to taking care of everyone else,” Jennifer explains. Support groups are built on trust between the facilitator and members, and those relationships can lead to openness to discuss topics that women may find more personal. Some of the topics discussed in a support group may include:
- How to talk to family about loss of breath
- Managing fatigue without guilt
- Using oxygen in public
- Navigating changing roles at work and home
- Fear, grief and uncertainty about the future
There is no cure for ILD, but treatment is available and may slow disease progression, reduce symptoms and improve quality of life. Not only can support groups and communities address the emotional and social toll of women living with an ILD, members can also learn about understanding medications, using oxygen therapy, and practicing mindfulness activities. Support is provided through every stage of living with ILD.
If you or someone you love is living with ILD, support matters. Learn more about support groups and educational programs available through the American Lung Association and Wescoe Foundation.
Blog last updated: May 7, 2026
