Cystic fibrosis is a life-threatening genetic lung disease that causes a buildup of thick, sticky mucus within the lungs and other organs. I was diagnosed when I was nine years old and it has changed my life entirely. Over the years, I have realized that those who don't live with cystic fibrosis or personally witness anyone who suffers from it, don't know very important aspects of the disease.
1. People with cystic fibrosis cannot be near each other.
You may have heard of the viral story of two patients falling in love despite their disease that forced them to stay away from one another, relating it to a similar plotline, The Fault In Our Stars. This was complete blasphemy for anyone who has cystic fibrosis. The one thing we are told from the very beginning is to stay away from anyone else who has cystic fibrosis.
This is because each patient carries different bacteria within their lungs and this bacteria can be spread. Although it may not be harmful to a normal person, to someone with cystic fibrosis, it can be lethal. There are very potent and strong bacteria that can completely destroy the lungs and cause death.
2. We may look fine, but that doesn't mean we aren't suffering.
Cystic fibrosis is considered an invisible illness. In most cases, you are unable to tell someone suffers from cystic fibrosis. I couldn't tell you how many times people have told me I look amazing even though I had spent the whole week with sleepless nights, coughing up blood, and barely being able to function.
It isn't until you are in the more progressive stages that you can truly see the disease physically.
3. We are on a high fat, high salt diet.
Yes, I just ordered two hamburgers, a large fry, and a chicken nugget meal from McDonald's; please don't judge. People with cystic fibrosis burn calories up to three times faster than a normal person. This is due to the genetic defect that causes the epithelial cells to not balance water and salt properly.
In turn, this leads to the production of thick mucus that causes issues with the pancreas and intestines, disallowing nutrients to be properly absorbed and food to be digested.
4. There is no cure.
There have been so many advancements in cystic fibrosis research. The life expectancy continues to grow. I hope that a cure comes about in my lifetime.
But please also take into consideration that those suffering from cystic fibrosis may hold feelings of fear of the future because there currently is no cure. The best thing to do is to be as supportive and understanding as you can.
5. It can be socially isolating.
From time spent in the hospital to time at home recuperating, you see those in your life thriving and your life just passing by. It can become very lonely and, at times, very hard to go through.
You miss normalcy of the everyday life and freedom of doing what you please. It is easy to get into a negative and isolating cycle. Your support system really means everything in preventing that.
