Hi! Well I gotta say I know exactly how you feel... I'm a guy whose 16 years old and also have very bad CF... I'm homozygous deltaF508 and have 4 siblings with the same mutation but they do not have the same intensity of CF as myself (my mom had 7 children- we're Catholic). I got CFRD, PA, 50% lung function (when healthy, goes down to 30%- when I get sick), Sinus/polyp problems, acid reflux, and now seizures & high-blood pressure (doctors can't figure out why, don't know if it is CF-related). There is some other stuff but I don't need to go on talking or complaining about myself, I just wanted to let you know I feel you!
Personally, the best friends I had were when I was a toddler to about 8 years old (parents divorced and my dad used the excuse of the military to move up to Washington State from Texas <img src="i/expressions/face-icon-small-sad.gif" border="0"> ) and then I had 2 very close friends from about 10 years up until 14 when "teenage drama" hit the scene. My friends started concentrating on problems which either were exaggerated or were not even present. They complained of the tiniest things which bothered them, or wanted to just talk about themselves; I couldn't talk about myself because- no, no, no- that would take attention away from their life-or-death decisions of whether to go to the mall or the movies (at least they had the money to do so...). Then all the guys wanted to play these intense sports and whatnot; I tried with them but I almost passed out after throughing-up. I even felt that they were annoyed with me since I couldn't keep up. Then when I would talk to them in conversation they would just not understand and ignore me (like I was speaking in a language they didn't understand nor care for), same thing happened in school.
Eventually they stopped calling me and when I called them they would say they were busy and couldn't come over (happened on my birthday the last 2-3 years...) but wouldn't explain why they couldn't. I gave them the benefit of the doubt as long as I could stand, but then I just came to accept the fact that in this materialistic world, most people concentrate on what they want and can get in life and not on the well-being of others (I guess this is why the divorce rate is so high in the country now.) I remember how I had a friend who lost an Ipod at my house he "worked so hard to earn money for" and so I spent the little money I had to buy him a PSP he wanted- two weeks later he comes over with a $1000 laptop. Knowing the generous and kind person I was, this supposed "friend" had guilted me and made me feel sorry for him (which he did in every interaction, I just couldn't stand it!) to get what he wanted. When my birthday came up I got a $15 giftcard but I didn't get too angry and just gave it to God; I now know that you should just expect that 99% of people only have a relationship for their own gain (same with my father...) and it will hurt you if you let it.
Another friend I had who was closer also just turned out to be so selfish; on my birthday I bought presents for him with all of my own birthday money for his birthday that was in a week. Two months pass, I don't hear from him, find out he didn't invite me to his birthday party (which he also did another year) and NEVER bought me a present for my birthdays. Again I was hurt so much; I know that giving a gift is about giving from your heart and not expecting anything in return, I didn't really care about gifts but more about knowing that my friends truly cared for me and would give something even if it meant they had to sacrifice something (I know I have). Sadly, most people really don't understand how CF makes you cherish the small amount of time we have, not to mention many people refuse to put others before themselves. I was depressed over this realization at first and did become a little anti-social... but then I started to go to Church and made some very nice adult friends.
High school made it worse since people didn't want to talk to the kid who was hacking up a lung 24/7 (many of which said "EWW!" to me even after I explained it wasn't contagious). Many others would be nice in a casual conversation, but when it came to actually talking they seemed scared or too lazy to try to talk to the kid who was gone from school 3/4 the time. When I left one school district for another, the former actually thought I had died! I later returned to it after 5 years and many people were amazed I was alive! (that was kinda funny but sad for me.)
After much turmoil and depression in social life, I chose to no longer hold that paralyzing hope that my friends were unable to come or that they had some big surprise for me, and the fact that many people didn't want to talk to me... I instead put my hope in God who never fails me and that black hole within me isn't so black now.
As for family, my siblings are all smart and I can relate to them better than anyone else, but since they haven't experienced as much with CF as I have, they don't always relate to me and my two older brothers generally blame me for all my illnesses (ironically they have CF too, but choose to ignore it). I don't have a relationship with my dad anymore because he remarried a gold-digger (my dad's a doctor) put her children's welfare above ours (even their medical welfare) and mentally and physically tortured us. I remember when her son attacked me because he didn't want to do his chores and so he got angry, came over and started choking me... I had just had major surgery on my esophagus (had a Nissan to help treat acid reflux) a week ago and he chokes that very place. He would've kept choking me till who knows what would have happened, but fortunately my buff older brother walked in , saw me being choked to death, and then rammed the SOB (sorry for the language) into the wall, held his throat and said "touch one of my siblings again and the next time you will be in a grave!" (I was so happy after hearing this and knew my bro truly did love me!) We all thought surely my father will wake up now and see the truth of this woman's family and their lies... NOPE! Instead I actually get in trouble/grounded for a whole month! Apparently I had "provoked" the kid into attacking me by getting angry at him for not doing his chores (I yelled but didn't cuss and was not threatening in any way) and so he got off scotch free. This event finally broke any relationship we children had with our "dad" and well, yeah. After much rebellion, the woman could no longer handle us and forced my dad to give us to our mother (yet they still antagonize us day and night). Over the time period I lived with them, I probably lost between 10-15% total lung function permanently. Fortunately, living with my mother has stabilized them for the last couple of years.
I do have a very close relationship with my mother and feel that she is truly the only person to understand and feel my pain as she has been through almost all the health issues I have been through even though she doesn't have CF. I know she would give her life for me as I would do the same. She was also the ONLY one who has fought tooth and nail to stay with me as much as possible whenever I was admitted or sick. My dad barely visited even though he worked in the same hospital! Anyways, my mother is truly the only one who I can fully relate and talk to, the only one I trust and confide in. Without my mom and of course God, I would have died years ago, but I didn't!
I interacted well with kids in elementary and during school functions, but none of they wanted to bother with a friendship. For my entire life I've been admitted to the hospital every 1-3 months out of the year (one year, though, I was out the whole year!) and so being around people my age is very difficult. I'm sure you know this: generally the stuff people in our age group talk about is just stuff we can't often relate to and vice-versa. If I tried to talk to my friends about the irritating effects of antibiotics, or how annoying it is to be awakened every hour in the hospital by nurses/doctors, they would simply tilt their heads. Same thing happens to me when they talk about how they "lol"ed today in class cause this one kid was "rofl" over some funny science concept (usually related to sounding sexual...) I also hate dealing with guys talking about sex and whatnot- always saying "hey she's hot" or "dude I'd totally hit dat" (if correct grammer is even used.) They may talk and think like that, but I don't! I look at people with live and dignity, not with sexual intentions! (Apparently, my mother says I'm a rare breed) Sorry I digress, it's just that CF causes us to have to mature and grow up at an astonishing rate compared to the average person; most people (even family sometimes) just don't understand and tend to put the blame on us for not trying to make a friendship, or being anti-social, or even being sick. That's a bunch of bologna, I've have tried so hard to make friends with a variety of different people, but alas, I am rejected and ignored. Part of the reason I think this is for me is because up here in Washington State, people are not very courteous and definitely DO NOT have any kind of hospitality (at least here in the Tacoma area, I hear the outer areas of Washington have nicer people) and usually treat you like an outcast for having a disease which they can't understand.
The biggest problem, however, is that with CF we think and react to life differently than the average person; the different burdens and problems we are forced to carry require a different set of standards. I have to spend 2-3 weeks in the hospital at a time too (on my second portacath- still working like a beauty!) and in isolation- which you obviously can relate to as well. I think people in school and the kids our age are in a way scared and lazy, let me explain: Having a relationship where one person cares for the other requires energy from both people and CF is no different. A friend of a CFer has to open themselves up and care for their sick friend; this will requires checking up on them, asking how they are feeling, being prepared to take action in any kind of medical emergency, and making an effort to go to a hospital to visit their friend when sick. There is also the worry of losing their friend, an ordeal which many people deal with by alienating the one they care for. The other problem is we CFers have a different set of values and see things with a different perspective so in a way we are on a different playing field, or a different type of life.
I find that I may have repeated some stuff in writing this and that I have sure complained a lot. I'm sorry, I was trying to let you know I can relate completely to you and in a way trying to vent myself. I've been torn by the social problems with society and feel so alone, but there is still hope (not trying to sound cheesy...) I am personally able to interact and befriend adults, whether in the hospital or anywhere, most of the time and they always tell me one thing: "You are so mature for your age." Many nurses I gotten to know over the years also tell me the problem is that my mindset is in level with an adult, not a teenager. Oh yeah, FYI, I know how sad it is when people promise to come see you in the hospital or elsewhere but don't. This has happened so much that I just gave up on even asking or believing such things. I just want to let you know, don't beat yourself up! It's not your fault that people your age won't connect with you or even try because our generation and age-group is so self-centered they cannot even consider the possibility of a friendship that requires giving their time and love.
Sorry, don't mean to be cynical, I just don't want you to have to go through all these realizations and feel all the depression that results from it. It took me years to find and accept the truth of such things, at least when we get a little older we can start to make true friends who care for us. Just know that after the teenage life, when adulthood is over the horizon, friendships will be made before our end. Don't worry about talking about your thoughts on death either, doing so will only prolong pain, and once you accept death, life will be so much more enjoyable as the worry is gone. People always tried to hide the fact that death was close to me when I was little (at age 10 I was 50 pounds and admitted every month, many thought I would die in the next 1-3 years) and do so even now. Instead of helping me deal with the truth, they would lie and talk about how well I am doing and that I need to stop complaining about my health. The one thing I hate so much is when I am told I am healthy, or sound clear, but I feel like crap and can hardly breathe! Then the internal conflicts over my health (thinking maybe feeling horribly sick is just in my head, but then why can't I breathe and why am I in the hospital) made my depression worse; I felt that my pain was ignored and that I was just being too weak when in truth my CF was progressing and becoming very detrimental. All this pain because most people would not talk to me about the possibility of death or about how sick I actually was. My mother never believed or told me I would die so early, but she did acknowledge the pain and effort to survive I had endured. Her love kept me alive and gave me some happiness through all of it. She is still with me now and since I've accepted all the possibilities of life I can live happily. I just put it all in God's hands, knowing Christ will sustain me, and try to live my life as best I can. I desire to help as many people I can, to spread God's love, and to do things which I enjoy doing. I take all my meds, nebs, and Vest treatments, so I'm doing all I can to increase my health- the rest I leave to God.
I hope this hasn't been depressing for you, I just wanted to help out in any way I can, and let you know "you're not alone". There is still happiness in life even with CF. I've found I get the most depressed when I concentrate on materialism in the world, so I am trying to detach myself from it as much as I can. Sorry for the long message; I hope this helps you find your answer. If you ever need someone to talk to, just message me, and don't worry about topics relating to CF which may be awkward (I'm not grossed out by anything like most people). I hope this helps and God Bless!
