What is Cystic Fibrosis?
If you were to google Cystic Fibrosis, you would get the following definition:
Cystic fibrosis is a hereditary disease that affects the lungs and digestive system. The body produces thick and sticky mucus that can clog the lungs and obstruct the pancreas. Cystic fibrosis (CF) can be life-threatening, and people with the condition tend to have a shorter-than-normal life span.
Here are some facts that sum up the bigger picture of Cystic Fibrosis:
There are roughly 30,000 people living with CF in America. Half of those people are over 18 years old, simply breathtaking, as most were told they would not see past their 18th birthday.
Cystic Fibrosis is an invisible illness, no one would know a person has CF unless told.
The average age for someone living with CF is mid 40’s.
Most men with CF are infertile.
CF is caused by receiving two faulty genes, one from each parent. You only have a 25% chance of receiving both genes if both of your parents carry the gene. After that, you have a 50% chance of being a carrier and a 25% chance not to get the genes at all.
The CFTR gene is unable to move chloride so mucus builds up quickly. This mucus builds up in the lungs, causing sticky airways which leads to infections and bacteria in the lungs. This results in difficulty breathing and a low lung function. When this mucus builds up in the pancreas, it makes digestive enzymes harder to break down and absorb food, which is why we take enzymes anytime we eat.
25% of adults with CF develop Cystic Fibrosis Related Diabetes (CFRD).
People with CF cannot be around each other since we can share “bugs” very easily. This is also known as cross infection.
Some CFer’s go through a double lung transplant, some run marathons, and some are doing both. Every person has a different severity of CF, some have it much easier than others. Cystic Fibrosis varies from person to person, depending on numerous factors including when they were diagnosed and the mutations they have. Every single person with CF is a fighter and we will not stop until it stands for Cure Found.
What is CF to me?
When someone asks me “What is Cystic Fibrosis?” I look at them and smile. Then I pause and try to answer one of the most difficult questions. I always tell whoever I may be disclosing this part of my life to, please DO NOT google Cystic Fibrosis because I would much rather explain my story, as it gives the full circle of both the bad and good of CF.
Cystic Fibrosis is a disease that has shaped my entire life in both a physical and mental way. It has taught me more than anything else in this world ever could. Cystic Fibrosis taught me the importance of physical health and mental health.
CF to me is routine, it is taking around 40 pills a day, doing breathing treatments, testing my sugar, taking insulin shots, and never missing a workout. The severity of my CF has gotten drastically better over the past decade. I am considered a very healthy Cystic Fibrosis patient. The mental toll that CF takes on its patients is something that is often looked over and does not receive enough attention as it should.
The one thing that strikes me the most mentally is the pressure to be positive all the time about every situation. Since I live with a chronic illness, I feel more pressure to portray to my peers and family that life is good. I try my best to live everyday as I preach; it drives me crazy when people do not understand the value of life. When I want to express the goodness in the world, I am often thinking to myself, why can’t people just realize how good they have it? Why do I need to constantly remind them that it really is not that big of a deal?
Over the past few years, I have noticed CF affecting my mental health more than my physical health. I am set on making sure that I can do everything for CF on my own, and that causes me to have a hard time letting others in to learn and help. I have struggled with the correct timing of disclosing my CF to others in fear that I may be looked at or treated differently. The burden of staying positive throughout any situation about life often overtakes my mind. I want to be the smiling, optimistic person who is beating Cystic Fibrosis by flying colors. Oftentimes when I am complaining, I stop and think why? I have it so good.
Cystic Fibrosis to me is scary. Even with the advances in medicine and my health, I always doubt my future despite having no reason to in the present moment. It scares me to think that I may never live to have kids, to have grandchildren, or even get married. It controls my mind and body where I sometimes fall asleep questioning my life, leaving a pit in my stomach.
On the other hand, CF is my teacher. It taught the meaning of independence at a very young age. The importance of having a routine. The ability to learn what to do on your own and when to ask for help. To pick up the phone and call your family or best friend after a fight because tomorrow is not guaranteed. The opportunity to see life in a new, different light. I will always describe CF as a curse of a blessing. If it was not for Cystic Fibrosis, I would not live life as I do. This disease did a lot of taking from me and still does, but it gave me more than I could have ever asked.
Cystic Fibrosis shakes us to our core, it knocks us down then builds us up. If you know anyone living with CF, I can guarantee you they are strong.
For more information on Cystic Fibrosis and my daily routine, please feel free to contact me.