I had a conversation with a concerned mother about the word "Terminal". CF is in fact a chronic, terminal disease Something most of us do not want to hear. In the actual scheme of things we are all terminal, as no one gets out alive. Nonetheless, having a terminal disease, becomes hard to relate yourself with such a thing.
★I wasn't roughly 24 before I started accepting I had a terminal disease. I would say I had a "lung and digestive disorder", that it was a "lung illness", or that it was a "life threatening", or a "life altering disorder". I refused to say the word disease and never said terminal. I guess I was trying to deny the inevitable. Using other words, to comfort myself a little from the reality that Cystic Fibrosis is a chronic terminal disease.
A terminal disease is a medical term popularized in the 20th century to describe a disease that cannot be cured or adequately treated and that is reasonably expected to result in the death of the patient within a short period of time. This term is more commonly used for progressive diseases such as Cystic Fibrosis. In popular studies, it indicates a disease that eventually ends the life of the CF.
By definition, there is no cure or adequate treatment for CF. However, some types of medical treatments may be appropriate anyway, such as medications, nebulizers, treatment to reduce pain or ease breathing.
Saying "I am terminal" is a mountain for anyone to climb, because the reality of it all is rather scary. No one wants to think they are terminal, especially if it is your child. It is very hard to grasp and see for yourself.
★The one beneficial thing, although we are still terminal, we are beating the odds with living longer, having better medications, treatments and living out our dreams. Keeping us here longer than we should have been.
However you want to look at the disease may it be a "condition", "illness", or "disorder" never brainwash yourself into thinking that you are not actually terminally ill. Don't push meds off to be "normal" or hide somewhere to take your meds so you don't stand out.
Educate everyone on your disease. Make sure you know everything that is going on. The good, bad, and reality of your disease.
Just because CF is a terminal disease does not mean you have a death sentence. The doctors have no idea on how long we will be here. Only educated guesses that they are normally wrong with. So live! Do not act like CF is the death sentence that it once used to be. Prove everyone wrong and have the time of your life with everything you do!!
★Each one of us is different and we handle our CF differently. If you do not want to say that CF is a terminal disease, there is nothing wrong with it. One day you will need to open your heart and realize the underlying disease.
No matter the language or terminology used, remember one simple thing, one word doesn't change anything about who we are or how we live our lives.
I am terminal and awesome!
Sandi
Sandi
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