Everyone is different. Everyone takes information and processes it differently. So what I am going to say won't apply to everyone but it's how I saw/see it.
When I was 13 I was told that I wouldn't live to see 25. News like that hit me hard. I didn't turn to drugs, crime, ect but I also didn't push myself to prove those doctors wrong. I went the fuck it route and decided to not take anything in life seriously. That attitude didn't hit me too hard until I did the transition from Children's to Adults.
At the good ol' age of 16 is when they start the transition to Adult's Hospital and it's not an easy time for Cfers. When you turn 16, you're entire life is thrown on your shoulders and you're expected to handle it with ease. Sadly, that wasn't the case with me. Because of what I was told when I was 13, I wasn't mentally ready to have my life weigh me down like that. I thought I was unstoppable and that CF was a joke. I only take care of my self as a kid because it's what the Nurses and Doctors told me to do. If I didn't I'd get lectured and yelled at. When they took that away, I stopped taking care of myself.
I'm not saying their shitty system is to take all the blame. I blame myself for being so stupid that I took my health for granted but the system didn't help. I was a kid.
So, they start the process by taking you to the Adult's and showing you around the outpatient clinic, take you to the Ward where you'd spend your hospital stays, and then introduce you to the Nurses. It's a miserable process let me tell ya.
Children's is bright, caring, you can feel the love in the air, everyone is cheerful. You feel good just being there.
Adult's is like prison. The paint is faded, the ceilings have mold or water damage, the nurses all look pissed off and overworked, the TVs are these little 10 inch screens that are staticy as fuck, and they charge you for cable where Children's was free. It costs 16 dollars a day for shitty cable in the hospital and 10 dollars a day for phone.
All the time added up from my hospital stays would probably equal a year to a year and a half. Now imagine paying 16 dollars a day for 365 days. That's almost six thousand dollars.
Shaw Cable isn't even that expensive.
In Children's clinic, you get like 6-9 caring Nurses who constantly ask how you're doing and seem interested and you also get 2-3 Doctors who do the same.
In Adult's clinic, you get 1 over worked nurse who doesn't seem to give a flying fuck and 1 over worked Doctor who really doesn't give a fuck at all and seems to be in it for the paycheck at this point.
Because I was a stupid kid I weighed the importance of my health based on the nurses and doctors and how they treated me. I was stupid like that. In Children's I was constantly being asked if I was taking care of myself and I was. I needed that.
In adults, you come in, meet your over worked Nurse, she'll ask you how you're feeling, if you're sick, she'll get the doctor and tell him, he'll come in, ask the same question, then prescribe you an antibiotic, then leave. The whole process would take about 7 minutes and 3 of those minutes would be you waiting on the Doctor.
A kid doesn't need that kind of environment.
So, without the needed questions of if I was taking care of myself by 10+ different people, I stopped taking take of myself all together. I figured if the doctor doesn't show concern, then why should I?
After 2-3 years of this, my lung functions dropped rapidly. When I was 19, I started the assessment for the Lung Transplant. Mid way through the assessment I asked to switch Doctors because I wasn't happy with my current one. It took a while to find a new one but when I did. My health got better and I pushed off transplant for 4 more years. This new Doctor gave me what I needed. She actually seemed to care about me and because of that my health went up. She showed concern so I took CF seriously again.
I mean, I still did the bare minimum because I was still in that shitty attitude of "I'm dead anyways" but I was taking care of myself. That bare minimum saved my life.
I apologize for the delay in the post. I spent all week trying to word everything properly and make sure it was coherent.
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