CF is not only a disease that affects the physical body but also affects your mental/emotional state. Many people with CF have depression and/or anxiety or other mental health issues. It is a hard fight mentally as well. I have not been shy with my depression diagnosis. It hasn’t always been peaches and cream. It is a fight. I have clinical depression. There others that have situational depression meaning that depression takes over when they get sick with a CF exacerbation or other CF related health situation. There is no shame in having Depression but there is a lot of stigma that comes with it.
I had to stop working due to my CF in the middle of 2004. I was not bouncing back from sickness/exacerbations like I used to and I was getting sick more often. Since CF is progressive it will get worse as time goes on so doing anything that can help slow down the progression is good. It was time for me to focus solely on my health and not getting back to work. It was a very hard decision because I really liked my job as a medical biller. My boss was very understanding and would have let me work from home had the company still allowed that. I then applied for disability and was approved about a year later. It is a shot to the ego that you are sick enough to get disability and that you can’t work anymore. It was hard to process but was the best decision.
“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.