Person Before Patient Survey Results: Getting to Know Our Community Members

The nature of cystic fibrosis (CF) can mean frequent hospital visits and medical care. Many people report that living with CF sometimes feels like you are a patient first and a person second.

However, every person is much more than a diagnosis. Who we are is really about our dreams, our thoughts, our feelings, how we spend our time, and so much more.

We held our 2021 Person Before Patient Survey to gain a deeper understanding of our community members as people rather than patients managing chronic health conditions.

More than 1,600 people completed the survey, providing a look at how a variety of chronic health conditions impact everyday life.

Here is what we heard from our cystic fibrosis community members.

Dealing with financial stress

For many survey respondents, finances are a big stressor. A number of respondents shared that they worry about money often and are concerned about having enough money to pay for all the medical care they need to stay healthy.

“Thinking about fighting the insurance company for coverage for needed testing.”

“Thinking about finances.”

The toll on mental health

Another big concern is the toll this diagnosis takes on mental health. Respondents shared that all the hospital visits and time spent thinking about their diagnosis leads to depression and anxiety.

These feelings can be so overwhelming that, on some days, people in the CF community do not have the energy to get out of bed. For many, it is just as critical to devote time to taking care of their mental well-being as to their physical care.

“I deal with PTSD, depression, nightmares, pain, anxiety, and panic attacks. Some days I am unsure if I can get out of bed.”

“Anxiety issues.”

Stressing about life overall

Some respondents shared that they stress about all the ways that CF affects their lives, from their parents to their romantic relationships.

“Thinking about my family back home, health, food, how to lose weight, how to get pregnant... everything.”

“My concern for my healthcare just in case I am unable to take care of myself.”

Managing CF is time-consuming

The majority of survey respondents shared that they spend more than half their time managing their health. This time includes seeing doctors, receiving treatment, or managing the overall impacts of CF. With so much time devoted to physical wellness, it is no wonder that many people report feeling very stressed.

“I spend more than 50 percent of my time managing my diagnosis.”

Most feel a sense of control

However, a bright spot was most respondents with CF shared that they feel like their condition is more or less under control with their current treatment plan. While CF is a daily challenge, fortunately, it is one that many in the community feel they are able to manage.

“I feel like my CF is somewhat controlled with my treatment plan.”

Spending free time on hobbies

The majority of respondents shared that they carve out some time each week for their hobbies in order to feel like themselves. People shared a wide mix of things they like to do, from baking and art projects to watching movies. For many people, their hobbies help relieve stress by taking their minds off their diagnosis and reminding them of who they are beyond CF.

“Browsing the internet.”

“Cooking or baking.”

“Drawing or painting.”

“Gardening or yard work.”

“Watching movies or TV.”

“Listening to music or attending concerts.”

Thank you to everyone who took the time to complete our survey. We always feel very grateful to hear from the CF community.

The 2021 Person Before Patient Survey was conducted online from June 4 through July 8, 2021. The survey was completed by 1,615 people from across Health Union's online communities.