Reclaiming agency in the face of CF-related financial stress
Despite the stigma, financial struggles are common in the CF community
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While the results of a recent study investigating how financial stress affects the cystic fibrosis (CF) community are alarming, they’re not surprising. I think it’s a perfect example of why this issue needs to be taken more seriously.
For the study, published last month in the Journal of Cystic Fibrosis, researchers surveyed over 1,000 people in the CF community, including adults with the disease as well as parents and spouses of people with CF. The results are worth digging into, but let’s discuss a couple of key findings.
Of 936 respondents, 67% reported experiencing at least one financial issue due to CF-related medical bills. The most common financial issues included:
- Taking actions to manage finances, such as delaying financial purchases (64%)
- Facing financial consequences, such as an inability to build up savings (57%)
- Difficulty meeting expenses (31%)
The authors noted that people with CF, along with their care partners, “report making substantial tradeoffs in healthcare decision-making to save money,” such as by skipping or taking less medication than prescribed.
Take a moment to think about that. In addition to all the responsibilities that come with having CF, thousands of people are forced to forgo medications or are unable to accumulate any savings because of financial stress. What if you had to choose between filling your prescription and saving up money in case of an emergency?
Taking back our agency
Financial stress has a pernicious way of robbing you of your agency. The specter of debt and high interest rates may force you to choose between your physical and mental well-being, increasing the risk of health consequences.
This stress is compounded by the fact that financial issues are rarely discussed and remain stigmatized. I am grateful to my colleague Jennifer Cogliano for broaching the subject in her recent column, which highlights a horrific predicament that recipients of Social Security Disability Insurance can face.
It’s crucial that we talk more openly about these problems. As the researchers wrote, “Those who were most likely to make financial and healthcare tradeoffs also reported the lowest comfort discussing financial concerns with their CF care team.”
I struggle with the topic because it can make me feel like a failure and a disappointment. The world revolves around money so much that it can feel like nothing else matters. I know that many other people with CF feel the same way.
The rational part of my mind knows that I am worthy, regardless of my financial standing. Despite that, financial stress can be discouraging and alienating.
The chaotic swirl of emotions can make it hard to see things clearly. It can be difficult to find agency amid this turbulence, but it’s imperative that we do. For instance, this might mean discussing finances at your next doctor’s appointment. There may be resources available that you’re not aware of. For me, CF Foundation Compass and my CF clinics have been super helpful in navigating financial assistance programs and insurance questions.
Reclaiming agency might not eliminate stress entirely, but every step forward is still a victory. I know it’s not easy, but if you’re facing financial challenges, I promise you’re not alone, and there is hope.
We have to name things before we can improve them, so this column is my way of helping others feel seen and, hopefully, reducing the stigma just a little.
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.
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