“Playing the Cards Life has Dealt”
Denial is a common feeling when dealing with a genetic incurable disease. The first people to deal with the denial and guilt are the parents when they get the news that their child has Cystic Fibrosis, a progressive incurable disease. Most all parents leave the doctor’s office after receiving the diagnosis in a fog of “this can’t be real.”
Now a days most all parents/family members go to “Dr. Google” to find out what the World Wide Web has to say about CF and what it entails. By “Dr. Google” I mean they go to google.com and enter Cystic Fibrosis and start reading everything that their little brain can retain, all the good and bad. The bad being what sticks with them. As time goes on the parents should educate themselves from reputable sites like www.cff.org. Also speaking with other parents of CFers and people with CF will help them know they are not alone and they can do this. Your CF clinic should be able to help you get in contact with others.
Some family members never get over the denial and/or guilt that their child/sibling/grandchild/niece/nephew/cousin/etc. has CF or whatever disease they are dealing with. Thus the reason that CFers can feel like they are a burden on those in their life.
Some family members have the “out of sight, out of mind” mentality. Let me tell you, that approach does not work, I’ve tried it. Parents have the guilt that they “gave” their child CF. CFers have guilt that they put their family through all of what CF entails, or should I say I speak for myself. We often feel like a burden. Siblings feel guilty that they don’t have CF and their sibling does. News flash, no one knows how or why one has it and the other doesn’t except God himself. I am one to not waste my time thinking about things that I cannot change. I can’t change the fact that my parents are carriers and the CF genes decided to meet up on my day of conception and not my brothers. I can’t change the fact that I have CF and my brother doesn’t. I can’t change that my parents are carries and that one or even both of their parents are carriers and so on. There is no use in trying to figure it out.
I truly believe that everything happens for a reason. We may not know the reason but there is a reason. I believe part of the reason I have CF is that I am strong enough to endure it and can have a sense of humor about it. It is not fun by any means but I try to find humor wherever I can. It is better to laugh than to cry or be frustrated about it. I’m not saying that “moving on” comes naturally or is easy at all but at some point you have to or you will be miserable.
It is hard when you “don’t look sick” for it to register with people, even family and friends, that you do have CF and really are sick. I have heard “but you don’t look sick” too many times to count.
That is what keeps many people from accepting the fact that you/they have CF. I have heard many CFers say “I feel fine” therefore they do not do what they need to do to take care of themselves. A lot of the care for CF is preventative care and not just when you get an infection. As the CFer, denial happens at different times for each person. How the family handles the CFers CF has a major impact on how the person with CF handles it. Will the person with CF and the family act or react in the time of need? Sometimes you never know until you are in it.
Acting on it is accepting that you have CF and you can’t change it and taking care of yourself. The family members need to be there for the CFer and encourage them to do all of the things they need to do to keep them alive. It is ok to not know what to say or to just be there. Doing treatment time with the CFer is one way to help. You could play games while they are doing their treatments and make it a family time.
I believe every CFer goes through a rebellious time at some point in their life where they want to deny the fact they have CF. They choose to not do their treatments, take the meds, etc because they want to be “normal.” You defiantly get very tired of doing breathing treatments, airway clearance, swallowing pills, doing IV’s, being in the hospital, coughing, spiting, being tired, running fevers, doctor appointments, x-rays, lung functions, and all the other things day in and day out to help extend our life.
My rebellious time was when I was a teenager, which is very common. I finally had to realize this wasn’t going away so I better do what I am supposed to.
I know quite a few CFers that don’t tell anyone they have CF, or very few people. I believe this is a form of denial. It seems that if you don’t talk about it, bring it up or acknowledge it, it isn’t really there. By not acknowledging CF in your life you are only doing damage because then most likely you are not taking care of yourself and doing your medical regimen. I know that I lost lung function during my rebellious time. I still wonder what my lung function would be today if I hadn’t taken “a break” from CF. A break from CF doesn’t work. Please learn from my mistakes, do not take a “break” from CF required treatments, it only causes problems. Denial and guilt can and will cause family issues or make for awkward family gatherings.