Thriving with cystic fibrosis (CF) means more than just surviving. It means truly learning to live an everyday life of fullness and wellbeing, despite having CF. While the average life expectancy of someone in the U.S. with CF may be thirty-seven, one can learn to manage the difficult symptoms, through regular treatments and therapies, and learn how to change their mindset and approach in order to live a happy and long life even with CF. Six secrets that may help one learn to thrive with CF include commitment, mental approach, resilience, relationships, contentment, and self-worth.
The same for all battles, learning to thrive with CF requires absolute commitment. Rather than trying to stay healthy and fit solely through the compliance of taking medication, one needs to become absolutely and entirely committed to making permanent lifestyle changes that will provide them with lasting success in the midst of CF.
The only way to win against a relentless disease is to be just as relentless and proactive back. Learning everything you can about your CF and about the available options out there for you to try will go a long way towards helping you learn to thrive with CF. For most people with CF, this approach requires adopting the right mixture of fitness and exercise, changing nutritional habits, and diligently sticking to your medical regimen. There will be days when you don't want to do the things you know you should in order to thrive, but you must learn to grab those thoughts and toss them aside then get back up, dust yourself off, and keep fighting.
Make the choice and commitment now to never cancel plans or call off of work outside of pre-arranged IV treatment cycles. Learn to always deliver and keep you word when assigned to tasks that others might choose to put off. Never underestimate how much your resilience will be shown to others when you prove you can not only survive CF at work, but learn to thrive with it and use it as an asset to how you are perceived by others in your life. This resilience can truly change your life and show you how often other people waste their time and energy on smaller issues as you continue to fight to live and work well your CF. You can have CF and still be considered a value employee or member of an organization as you bring your coworkers and employers into your survival circle.
There are few things that will be of equal importance to relationships in you learning how to thrive with CF. You will need both people who have and fully understand CF as well as close people who can help you take your mind off of your serious disorder. If you don’t already know any people with CF, you may want to look for an online support group or speak with the members of your medical team to find a physical support group somewhere near you. If you cannot find a support group that specifically centers around individuals with CF, then you might consider finding a general grief support or support group for people with nonspecific serious illnesses. Even if you do find a wonderful support group full of people who know or live what you are going through, you do not want to pull too far away from your non-CF friends and close family members. These people will be important motivators for you to stay well and reminders of why you are fighting so hard to thrive with CF in the first place.
It may seem counterintuitive to think that you can learn to thrive with CF with contentment, but it is important and very feasible. People who are healthy and happy are usually the type of people who have learned to reach for goals while still knowing how to remain presently in each moment and enjoy everything as it occurs. Contentment is more than just accepting things the way they are, it is also a way of living so that you fully immerse yourself in every moment, no matter how big or small or how bad or good the moment feels. The opposite of contentment usually means never being satisfied or constantly worrying about the future and/or regretting the past. When you are always thinking about yesterday or tomorrow, you never get the opportunity to stop and enjoy the good moments as they occur.
Learn quickly that while you may have CF, it does not have to have (or ruin) you. It is true that CF can be a lonely, miserable, and unforgiving disorder when it is at its worse, but even in the midst of the pain and misery, you can still maintain at least a glimmer of positive self-worth. Karma never plays with serious or terminal illnesses and nobody ever deserves such ailments. While it may be easy to begin to feel like you are your disorder, you must try to maintain your sense of worth and self beyond CF. If you can change your thoughts, you can change your entire life.
Your self-worth comes from somewhere deep inside you and you will never find it just by having a better life with better health, more money, or better relationships. Your self-worth must come from within.
The following 15 tips may help you to improve your self-worth:
- Set yourself several small goals each week. Your goals can be as simple as remembering to pray each day or doing something you’ve been putting off for a while.
- Try to read at least one non-fiction book each month. You will probably be reading a lot of research texts on CF, at least in the beginning. Reading non-fiction will be a healthy way to relax and distract your mind just a bit.
- Every night at the end of every day (especially really hard ones), write down something you are proud of yourself for doing. On some days may be as simple as going the whole day without crying or lashing out at others.
- Tell your family members, friends, medical team, co-workers, or support group how much you appreciate them being in your life.
- Learn to say no to people when you don’t want to do something.
- Do everything you do as good as you can. Sometimes this might mean something as simple as completing housework or a project at your job.
- Learn to walk and talk tall and proud.
- Try to keep up with your personal hygiene and appearance, even when you don’t feel well. Many studies believe that looking good on the outside can lead to feeling better on the inside.
- Do something special just for yourself each and every day.
- Get your mind off your illness by learning a new skill or taking up a hobby that you’ve always wanted to do.
- Learn the art of tactful assertiveness and speak up for yourself when dealing with people in every area of your life.
- Immerse yourself in music or scents that you adore and that make you feel warm and gooey inside.
- Learn to live in the present moment.
- Let go of any feelings of regret.
- Avoid being around any people that are negative or depressing.
The Cystic Fibrosis Foundation
The Cystic Fibrosis Lifestyle Foundation