Feeling Seen With an Invisible Illness

Whether you are open about your journey with cystic fibrosis (CF) or you don’t typically bring it up, there may be some aspects of your experience that the people around you may not fully understand. Many symptoms of CF aren’t easy to observe from the outside, and with fluctuating health issues, it can feel especially frustrating when others assume you feel fine because you “look fine.”

It’s important to remember that while these situations can feel isolating, you are not alone. Observing your own patterns and connecting with others in the CF community can forge a deeper level of understanding and resilience for the future.

The emotional rollercoaster of CF

Living with CF can sometimes mean navigating unpredictable health changes. Recognizing these emotional cycles is the first step to managing them.

Sudden flare-ups: Health can change suddenly, disrupting daily life and plans
Treatment fatigue: The constant regimen of medications, therapies, routine tests, and care center visits can lead to burnout
Mental and emotional struggles: Feelings of sadness, fear, or hopelessness are common and should be addressed. If you’re struggling with emotional distress, you’re not alone—call or text 988 or visit 988lifeline.org for free, confidential support 24/7 from trained counselors, supported by the Substance Abuse and Mental Health Services Administration (SAMHSA)"

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There was a time when the pain was unbearable and I was not shy about seeking help. I looked for therapy and also I knew that my daughter and my son also needed it. So we went to family therapy because we wanted to make sure that we can deal with this in the best possible way.

–Maggie, a caregiver of an adult child with CF

Rejecting stigmas

CF is more than just a childhood lung disease—it’s a lifelong journey with a variety of physical, emotional, and mental challenges. While the implications of living with CF have changed over time, outdated misconceptions still persist. Your struggles are real and will continue to change throughout your lifetime. Being vocal about your evolving experience with your care team is key to getting the support you need.

Consider the following misconceptions and steps you might take to address them:

“Only obvious visible signs of illness are real symptoms.”

Invisible symptoms like chronic pain, fatigue, and lack of focus aren’t always easily identifiable through a medical evaluation. If you are struggling internally, it’s important to relay that information to your care team. You can also ask them for help when it comes to requesting school or work accommodations if you are worried that your health issues are not being taken seriously by your teachers or employer.

“CF only causes problems in the lungs.”

Everyone’s manifestation of CF is different, but it typically impacts multiple organ systems and can cause problems with digestion, fertility, bone density, and more. You know your CF best, and it’s important to advocate for your specific needs in any setting you find yourself in. Get tips on how to empower yourself in conversations about CF.

“Emotional well-being isn’t as important as physical health.”

CF doesn’t only affect the body. It also impacts the mind. Complicated emotions will arise and can make it difficult to manage day-to-day life with a chronic illness. Conditions like anxiety and depression can also occur in people with CF and should be taken seriously. Learn about the differences between common feelings like stress or sadness vs a diagnosed mental health condition and remember your emotions are valid and worthy of care and attention.

“CF is a childhood disease.”

CF isn’t something people “grow out of” and needs continuous management through adulthood. From moving on from a pediatric care center to building out a multidisciplinary care team for evolving health needs as you get older, pushing for an approach to treatment that acknowledges your unique, independent lifestyle as an adult is key.

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Thankfully, the CF community on social media is amazing and very encouraging. Like, of course we don't meet in person, but meeting some people that I know on the internet, even though our stories are so different and our lives are so different, like there's something that has us the same.

–Belle, a college athlete living with CF

Leaning on your community

Connecting with others who live with CF and relate to what you’re going through can be life-changing. It may be helpful to engage with the community through online forums, social media, blogs and podcasts, one-on-one programs, and support groups. To find people who may be facing similar challenges, consider tapping into some of the following resources:

Join a group with Psychosocial Support Programs and Classes through the Cystic Fibrosis Research Institute (CFRI)
Connect one-on-one with CF Peer Connect through the Cystic Fibrosis Foundation (CFF)
Listen to community perspectives on the Uncommon Lungs podcast or follow others with CF on social media or through email newsletters, blogs, or vlogs

You can also always ask your care team for recommendations on local programs, groups, or community events that are more tailored to your specific needs.

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