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cf insights cf insights

Living with an unpredictable disease

When you have CF, life can often be unpredictable. A simple cold can turn into an infection and an infection can lead to a long hospital stay. Although most people were diagnosed and have lived with CF since birth, it can be difficult to adapt to the unpredictability of this disease. Hence, we asked our contributors how they manage to cope with the uncertainties of the disease and last-minute plan changes.

 

“I have always been someone who plans things to the best of my ability, but CF makes that nearly impossible. I tried to brush it off when I was young, saying that CF would never actually affect my life, but I have learned that that was a very naïve idea. I remember getting so discouraged and feeling like such a letdown when I had to cancel plans because I was unwell, that I decided life was more important than sweating the small stuff. I plan as though CF will not be a problem but have adjusted my expectations to allow the possibility of needing to make alternate plans okay. Nobody really knows what the future holds, a cure or control for CF could be found in the next decade or I could be in a car accident tomorrow…either way I want no regrets and no missed opportunities. I’ve learned to do what makes me happy and add different directions on my journey of life if need be!” – Meaghan MacRury

 

”Cystic fibrosis adds another layer to life’s unpredictability.  One needs to be prepared for last minute changes in plans or health uncertainties that may need immediate attention.  I have learned in my life that I need to be willing to adapt to new, and sometimes surprising, circumstances.  Willingness to openly accept and adjust to new situations is a very helpful character trait to possess. We all know “things happen.” Chronic illness adds to one’s awareness to contemplating the future – a lot of thinking, overthinking and potential rumination.  “What if” thinking is how I have learned to describe it for myself.  “What if this happens?  Or that happens?”  I have found that dwelling too long on disappointment can be futile and unhealthy.  Accepting, adjusting and adapting, in my experience, is the healthiest way to proceed after surprising circumstances arise or when life goes awry. Further to my point, trying to maintain a positive attitude is infinitely helpful in the short term and long.  As mentioned, cystic fibrosis is unpredictable.  When cystic fibrosis related circumstances arise my best advice is to deal with it in a timely fashion.  Deal with the now.  One’s health is paramount.  Looking forward to future opportunities with positive (and cautious) anticipation helps one maintain positive and healthy thinking.” – Alex McCombes

 

“Dealing with the uncertainty of living with CF is like living with a timebomb. However it’s not wondering if it’s going to go off but simply when? One of the most frustrating things about CF is that you can be healthy as can be one day, and the next… you’re into a 3-6 week antibiotic therapy or worse. And the sad thing is that there’s little we can do to control it. Like most CFers, I am not the best at accepting the fact that I may be sick, and if I am, I often don’t allow myself to accept it because I think I can out think my body into getting sick. Sadly I fail most of those attempts. I do however believe I have the internal will to not let CF get the upper hand, and I’ve seemed to have been able to win that battle for 51 years now. Thankfully I am lucky enough to also have an incredible partner who stands by me, throws me a lifeline, or who knows how to lovingly kick me in the behind when I need to deal with the inevitable. It is truly difficult for most partners of CFers to keep up that pace over a long period of time, but I am lucky to have found such a girl in Agatha. Coping with the ever changing challenges of CF is certainly a huge learning curve that I have still yet to master, but at least at my age I have been through the gamut of trials and tribulations and have learned how to cope with a number of different experiences. Each experience made me stronger and more aware of what to expect and has helped me raise my personal bar on the coping scale. It is difficult enough to cope with the regular stressors of life, but for those of us with CF it makes life twice as challenging. We are, however, a special breed of humans who are particularly built to thrive and face these challenges head on!” – Tim Vallillee

 

“I wouldn’t say I’m glad I have CF but there are things about what having CF has taught me that I really do appreciate. The ability to be adaptable is one of them. From an early age, I learned how to roll with the punches that CF threw and overtime, I just got used to adapting my plans to accommodate my health. I always have a plan B and I tend to keep my expectations low to avoid major disappointment, because I’ve definitely been there. Having to miss family weddings because I’m too sick, missing beautiful tropical vacations because of health complications or seeing concerts you’ve been waiting months to go see; CF is such a burden sometimes and it’s frustrating, disheartening and hugely disappointing when CF gets in the way of living your life. Getting angry at your illness when it’s forced you to change your plans is ok, maybe even therapeutic, but for me, I just don’t see the point. After so many disappointments, you just learn to lower your expectations and roll with it. That’s not to say you can’t keep your hopes up and it certainly gives you an added appreciation for when your health is stable and you can stick to your plans. But keeping expectations to a minimum has really helped keep me relaxed. The reality is, CF is an unpredictable disease and there’s only so much you can do to keep things stable. That can be incredibly frustrating. Allowing yourself to feel those frustrations and disappointments is important, but it’s also important to maintain perspective, adapt your thinking and move forward.” – Kim Wood

 

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