Sometimes it seems as if everyone knows what they would do in your shoes, and they are happy to tell you so.
“If I were you,” they might say, “I wouldn’t even bother with college. I’d just travel the world. College takes up too much time.”
There’s nothing like the potential of a life-limiting illness to make people prioritize — except when you’re born with one and for your entire life, you’ve craved what others take for granted.
With cystic fibrosis, it can be difficult to conceptualize the future. It seems so remote, yet it comes too soon. Our heads are clouded with stories tinged with mortality, while success stories don’t seem to garner as much media attention. Dreams can feel impossible and unattainable, so the alternative is to do nothing. Stasis is, at the very least, comfortable and familiar. It holds nothing unpredictable and has no risk. Unfortunately, there’s also no reward.
The average lifespan for a patient born with cystic fibrosis in this century is now in excess of 40 years old. That seems short, yet there’s so much to accomplish, and that number continues to climb. Many young adults with CF who thought that preparing for the “real world” wasn’t for them now face a difficult decision. CF modulators are helping many to stabilize, treatments are improving, and infections are becoming less common. An entire future is ahead of us, but it requires work to get there, and many who were encouraged not to participate in things like school find themselves floundering and at a loss about what to do.
Giving up seems forgivingly easy, but even with a limited lung function, it’s possible to achieve your goals. The key is to seek accessibility options; know that you have limitations, but also that there are many ways to work around them. It’s time to start planning for a future and to stop living in an outdated model of our understanding of cystic fibrosis. There’s nothing to lose and everything to gain.
Just by making plans for your future and your career, you gain confidence and assurance. You have something to work toward and to think about apart from your health. It doesn’t even have to be a traditional desk job — work on art, sports, hobbies, or crafts. Just don’t remain under the assumption that there’s nothing in your future to work toward.
Adulthood and cystic fibrosis still need further discussion. As the population lives longer and longer, things like work and school will need to be discussed. Until they are, it’s up to us to forge the way and show that CF is so much more than just a childhood disease.
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 Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.