Is it just me?
Thursday, January 31, 2008
I’m 31 and I was recently pondering an area of my life that is semi-lacking and am just wondering how other people out there feel about it… I was so lucky to have found love a few years back when that ended I found myself wondering if it had to do with my CF… I had walked in one day and Justin was sitting at our desk, as I got closer I noticed he had pulled up a website on CF and all the stats… He turned around and had tears streaming out of his eyes… I explained to him that I was healthy and that no one is guaranteed tomorrow… I told him that my CF was not going to kill me and to be honest with his past-time hobbies (Motocross, ultimate fighting, quadding) that I should be more worried than he should… He assured me that it wasn’t a big deal and that he loved me and my CF was not going to play a part in it… As time went on and we found ourselves engaged and talking about children… He was tested to see if he carried any of the CF genes and it came back he didn’t… We were so ecstatic about the news… A few months later we were over with no real reason why… He would swear it had nothing to do with my CF, but it is the only logical reason I can explain how a relationship like ours would just be over…
This was not the first time something like that had happened, it was just different because it appeared that my CF wasn’t going to play a part in our relationship… A few times in the past I have had relationships that have seemed to have ended because of the CF and the fear that comes along with being in love with someone with a possible life threatening disease… I think that men with CF may have an easier time finding a gf/wife that is OK with it because women have the need to take care of someone, so it works out better in that case, I think… That is just my opinion though and I am SO curious what you think about the subject… Has anyone else out there found that once their CF is mentioned, that the relationship changes…
Tags: CF, Cystic Fibrosis, love, relationship
i’m 30 and i found love when i was in my late teens early twenties. i guess guys at that age dont really think about future things and are more likely not to care about the cf. as i’ve gotten older the guys seem to think more about their future and how being with someone with cf just wouldnt be good. i have had guys that just stop talking to me because of my cf but sometimes i can understand where they are coming from cause i feel like cf does suck alot. now i’m on oxygen at night and when i work out so that’s another thing guys arent going to find that attractive. lol. i think love is great but i’m sure god knows why i’m alone and he knows what he’s doing.
January 31st, 2008 at 7:16 pm
by wendy victorero
i have had the same problem. at 32, i’m still single and the worst thing i’ve done is continue to stay with a guy who has point blank told me we are too different — he’s too active (sarah – much like your ex) and i’m always too tired. i also have fibromyalgia as a result of a car accident. it has been quite a struggle. i hate the fact that i’m not working anymore – initially b/c of the fibromyalgia. my days are always a struggle – cfers know what i mean. it takes all of my energy just to get up and do my meds. and the guy that i fell in love with wants to spontaneously go and do whatever, where ever and he definitely uses cf as the excuse for our relationship. we stayed up many nights in which we were both crying over the possibility of him losing me, us having kids and then losing me. he couldn’t handle it, so he became increasingly distant. he threw himself into his work and has convinced himself that we would never work out.
now, i’ve met a few guys since and they seem turned off by the 24/7 oxygen. i want so badly to find true love and yet i feel like cf and the oxygen are setting off huge alarms with guys to stay away. i remember i would get hit on all the time when i was out in public, now i get the sympathy smiles. it’s so frustrating. meanwhile, i’m fighting this battle to stay healthy b/c my doctors were wrong about how much time i have left on this planet. only God knows that. in my heart, i feel as though i have time to meet someone, fall in love and marry him. but then there are days when i feel selfish and think, “what if something suddenly happened?” i just keep telling myself i’m not in control and the power of prayer is just that. powerful!
i feel your pain! guys using cf and saying that it scares them too much is a cop out! if you have any suggestions for helping me help others get over the fact that i wear oxygen 24/7, i’d love to hear from you.
keep on fighting!!
February 2nd, 2008 at 2:05 pm
by Kim Potts
Hey Sarah. Its Spencer from http://www.livingindubiously.com ….
Growing up, I had a number of self-worth issues surrounding my CF. I assumed that a healthy relationship would be difficult for me, as no one wanted to be with a “sick” person. Because of this inherent belief, that is exactly what i had experienced! Not because I presented myself as sick, but because i naturally became secretive and ashamed of the unique things in my life that made me who i was. In short, I was blocking my true nature and energy from exuding confidence, because i didnt except having CF. And after all, if i didnt except it, how could anyone else?
What changed for me was that I took charge of my life, got inspired and excepted the fact that my disease didn’t DEFINE who I was. I wasn’t Spencer with CF. I was merely Spencer. And ill tell you what DOES define me. I am Spencer with a message, an ambition, a talent, and an amazing story. THATS what defines me ……. and now THATS what people see when they get to know me. CF is merely a garnish on the top of the main course of my life. And if someone doesnt except me because i have CF, then they care too much about the things that aren’t really me anyway. They’ve decided to not see me for who i really am.
I have been fortunate enough to have been in several rewarding relationships in my life, and NOT ONCE has CF gotten in the way of them. Im a warrior, and any warrior that lives through battle will tell you that thoughts of failure and death did not win the war. It was thought of victory, and victory alone that did so.
My greatest and most heartfelt advice to anyone living with disease and searching for love is to never lose sight of who you really are. What TRULY DEFINES you? Never let disease define you, or that is the only avenue you give for others to do so. Your true nature and spirit are what people will fall in love with, so let that be presented in everything you do.
luv n light
Spencer
http://www.livingindubiously.com
February 7th, 2008 at 11:59 am
by Spencer Burton
Spencer,
Thanks for your advice. Until about 3 years ago, when my CF was becoming increasingly worse, I was a very confident woman. But my former roommate began to notice subtle changes and realized that something was wrong. I had lost sight of myself and now it’s so foggy, I can’t remember the woman I once was- in detail that is. The fatigue has gotten the better of me, and most men are looking for a woman who can be an active partner in life. Being on oxygen is limiting. Like you, I went through a stage when I was young in which I didn’t want to stand out from others, and I was ashamed. Now, it seems that I’ve come full circle.
Hopefully, you will check this sight again or any male perspective would be nice. How do you even bring up the subject and when is it the appropriate time? I’m currently online dating, and I’ve always believed full disclosure was the rule to live by. Now that I’m wearing oxygen, I’m wondering how much should I tell. (I’m currently doing the online dating thing – thought I’d give it a try. Worked for my dad and stepmom).
February 7th, 2008 at 9:01 pm
by Kim Potts
Hey…
I’ve had problems with the same thing- and don’t tell me that you’re 30! I’m only 21 and worry about the same thing!!! (but seriously, congrats on being 30!!!!….I really hope I make it to 30!) As I get sicker (and I just had a recent scare) the only thing I want is to be married. I’m afraid if I don’t get married now I’ll miss my chance and no one will love me when I’m sicker. Right.
You’re not alone. I haven’t had time to read the other comments, but you’re not alone.
~Carla
February 22nd, 2008 at 7:48 am
by Carla Weffenstette
I haven’t found this at all. In fact, I’ve found the exact opposite. The guys that couldn’t deal with me having C.F. left a long time ago and although I was heartbroken at the time I’m glad I didn’t stick around to learn that they couldn’t hack it. The men I have dated love me for ALL of me. The good, the bad and the ugly…and let me tell you…there is very bad and very ugly. But to make up for it I always make sure that there is the VERY GOOD too. Even on oxygen, sick as a dog I always looked for a silver lining and managed to find it even if it was just that I wasn’t addicted to drugs like the crack addict in the bed next to me. I made oxygen tubes a fashion accessory and face masks all the rage. If you have confidence anything is sexy and fun. And don’t get me wrong, there are moments of total despair and darkness. But by the time my boyfriend saw those he was already hopelessly in love with me (muahahaha….i tricked him!)
As for introducing a new partner to CF? I always made it not a big deal. Sure, the first time I was admitted while we were dating (3 weeks in) he was scared but I assured him that hospital beds are perfect movie watching excuses and that the nurses bring us as much ice water as we could want.
Now….I am so grateful that I have CF and that it is a part of my relationship with my boyfriend. Because….I know he will be there forever. I almost died last fall directly after receiving a double lung transplant (there were complications because of how sick I was). Afterwards I found out that my boyfriend (who was not particularly religious before this) got down on his knees and prayed for 6 days until I came out of the coma. And now? I KNOW he will ALWAYS be there for me. Because we’ve been through hell and high water together. When I was finally with it enough to talk to him on our own he told me that he had been forced to picture his life without me in it and the thought of that had been more than he could bear so he wanted me to know that he intended to live every single day of his life with me. He told me that we simply had to get married and have a family together and die holding hands at a ripe old age because he could not live without me. My boyfriend is a quiet, thoughtful musician who never says anything he doesn’t mean and is not one for grand gestures. He is also 21 years old. I am 23. I am the only 23 year old who has no question what so ever that I have found the love of my life who will be there for me no matter what and so I feel blessed to have CF. This doesn’t just go for my boyfriend but also for my family and close friends. We’ve been through the worst a family can get through and we’ve made it out to the other side. I know which friends were there for me and which ones slowly dropped off the radar. I only recently found one of my closest friends who was there visiting me as much as she could near the end….she finally confessed to me that every single time she came to the hospital to see me she would go home and cry herself to sleep because it was so hard to see me like that. But she was there for me and I will be close with her for the rest of my life because of it. Having CF simply gives us an opportunity to shine in the face of darkness and find people who are willing to go the distance.
If your OK with it then they will be too.
I hope that you find your shining star. Actually I hope you ARE that shining star so that others can’t help but be pulled in by your radiance.
p.s.- I think its harder for guys with CF to find partners because it is socially acceptable for girls to be underweight and young looking and slightly weak but malnourished guys who look like they’re 12 have problems attracting the opposite sex.
February 27th, 2008 at 10:43 pm
by Eva
YAY!! There is hope… I have actually met someone in the last month and it is amazing to talk to him concerning my CF… he has no fear about it… he figures he will enjoy bme as long as he has me… which he obviously hopes is along time… he is wonderful and I am very thankful for him…
I think it also has to do with the group of people you are hanging out with.. I have had many boyfriends get scared off because of it… though I would never take it back because everything in your past has made you who you are today… and I love who I am today…
Thank you all for your comments, and Carla, girlie, don’t give up… he is out there… and when you find one that deserves you, you will know and he will never let you go…
March 4th, 2008 at 3:05 pm
by Sarah Morris