Cystic fibrosis (CF) is horrible. Say it again for the people in the back: It is horrible. To be transparent, I’m writing this article in a bad mood, so naturally, I look to my diagnosis as a means to understand my frustration. I don’t believe this is unfair — I recently have discovered that my disease is as much a diagnosis as it is an identity.
I’m in a state of life where much is in flux. I’ll likely be moving in the next couple of years, I’m forming my identity as an adult, and I’m figuring out what to do with my life. Side note: pursuing a PhD left me more confused about my career path than before I started it. I would have hoped it would have done the opposite. But kvetching aside, why do I circle back to CF when I have any anxiety or angst? Because I believe it’s always at the top of the list of things to consider. It’s annoying, burdensome and no matter what young adult I grow up to be, no matter what my job title says, it won’t affect the fact that I have CF.
There are times when I like to forget that I have CF. I wouldn’t be as concerned that I may not be able to afford my meds in my next job, that I could live in a dump that would cause my health to decline, or that if I had a lapse in jobs, I could lose insurance. It’s exhausting to harp on these concerns, but with CF, you must. Moving to a city like New York, where the rent is absurd, has real consequences for those of us with expensive diseases.
It would be fruitless to write a post for my own cathartic benefit without having some sort of resolution or advice to offer. I apologize for how elementary this may seem, but my advice is to seek advice. To those who don’t have CF, this may especially sound vacant. But to those who have had to learn to accept a potentially fatal illness, it takes a lot of guts to discuss your future.
We’re forced to accept our reality and admit our limitations. We have found conversations on what we may see as a weakness in our identity. Trust me, it’s hard and at times debilitating. That’s why we with CF need to talk to others. Talk to your friends, family and co-workers. Anyone you feel comfortable opening up to, do it. Learn how to parse good advice from bad, and how to figure out what is important to you.
There is no regimen for how to live your life with cystic fibrosis. Care teams can give you advice on how to stay healthy, but they don’t tell you how to navigate the inevitably difficult decisions that come with being a human. And for that, I recommend those of us with disease find our support networks. Mine, to me, have been life changing. They’ve helped me through some of the most confusing situations and the toughest of questions. And for that I am grateful. CF is not a disease we should learn to handle 100 percent on our own. No one goes through life without advice from others, and CF should be no different.
We have an exciting future ahead in CF. Things are likely to change. We may see CF turn into a maintenance disease. Let’s talk about these futures with friends. Let’s talk about the excitement, the anxiety and the fear that comes with it. Open the discussion to be ready.
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.