Is any other CFer jealous of other diseases?

[Enzo2311]

Alright. I feel horrible for saying this, but I wanna see if other people like me think like this.

I feel jealous of other diseases and conditions like cancer and diabetes and asthma, because they get so much attention, for me, when someone says they have asthma or cancer it's an automatic "Oh my gosh, I'm so sorry!" But if I say I have CF, I kinda feel like they go "Oh wow that sucks hah". Like its overlooked as something not so serious. When for me, I feel CF is just as serious as cancer (and probably more painful?). Diseases like cancer and asthma and diabetes probably have billions of dollars donated to them, while CF charities don't have anything like that, which makes me mad cause people should donate more to CF than asthma and diabetes considering those aren't lethal if you take the right steps, whereas CF can only be slowed. Another story of min is I have a friend who suffered from cancer 6 years ago, she gets sympathy like "Oh you poor thing! Well thank God you are here today, you're such a trooper! Stay strong for me!" (And I've even seen people cry talking to her) While here I am fighting a different kind of lethal disease and all I get is "We'll you look healthy so that's good!" Even typing this is kinda pissing me off cause I just think of all the 100+ times CF has been overlooked. I'm happy there's a few celebrities like Boomer (esiason) and Rosie (odonnel) and Joan (rivers) who help CF (whereas it seems like there's over 1000 celebrities sponsoring cancer).

So yeah, that's my reason of having an extreme jealousy of other diseases.

 

[Nugget1]

I most definitely am not jealous but get angry when CF is treated life the orphan disease that our government categorizes it as. I don't have CF but my beautiful, funny, blond, blue-eyed daughter does. Because she doesn't look "sick" people don't realize that she IS DYING! I try to raise as much money for the Great Strides Walks as I can knowing that a "cure" is so close and the apathy that I'm faced with is frustrating! I don't think that you would ever wish ill upon anyone, but if one more person asks me to support Autism Awareness I think my head will explode. I don't diminish that autism is horrible, but to the best of my knowledge it has never killed anyone. No one has ever died that had CF that didn't play a part in their death. When I try to explain that CF is a progressive disease to people, they look at me like I'm growing a new head. I have to say the words "At the present time she will NEVER be cured, this WILL kill her." I know that scares people, but a cure is close. They could part with a few dollars and be part of the cure. But I too feel that when you say cancer or autism every bodies ears perk up, CF...the conversation just keeps rolling along. It makes me sad and angry for you, for my daughter for everybody who deals with this every day.

 

[rosesixtyfive]

There was a rush of support when Sam was born and diagnosed a few days later, but the support does fade away. I have had people ask my husband and me if our son will eventually outgrow CF. I even have relatives in the immediate family who believe that it can be prayed away, that we could pray and he would no longer have CF. There definitely needs to be more awareness and support. I have heard good things about the band Green Day.

 

[azdesertrat]

I'm too busy trying to take care of myself to worry about other diseases. At this stage, trying to stay out of the hospital has become a full-time job for me.

 

[Enzo2311]

I most definitely am not jealous but get angry when CF is treated life the orphan disease that our government categorizes it as. I don't have CF but my beautiful, funny, blond, blue-eyed daughter does. Because she doesn't look "sick" people don't realize that she IS DYING! I try to raise as much money for the Great Strides Walks as I can knowing that a "cure" is so close and the apathy that I'm faced with is frustrating! I don't think that you would ever wish ill upon anyone, but if one more person asks me to support Autism Awareness I think my head will explode. I don't diminish that autism is horrible, but to the best of my knowledge it has never killed anyone. No one has ever died that had CF that didn't play a part in their death. When I try to explain that CF is a progressive disease to people, they look at me like I'm growing a new head. I have to say the words "At the present time she will NEVER be cured, this WILL kill her." I know that scares people, but a cure is close. They could part with a few dollars and be part of the cure. But I too feel that when you say cancer or autism every bodies ears perk up, CF...the conversation just keeps rolling along. It makes me sad and angry for you, for my daughter for everybody who deals with this every day.

holy crap that's what it's like! I HATE HATE HATE getting stories of "well CF can/has be(en) outgrown" and I even had "I had CF when I was younger, and I outgrew it", when someone told me that, that honestly made me want to cuss a storm at them. Obviously you never had CF and the drs who diagnosed you knew nothing (I'm talking about the lady who said she outgrew it). Now whenever I tell people I say "I have a life threatening disease called Cystic Fibrosis" (even then people don't treat it as serious as cancer) then that usually leads to the question "Does it have a cure?" And I say "No, it doesn't have a cure and I will most likely die at around the age of 40 because my lungs are slowly deteriorating". And even after that cancer is treated more seriously. When I was younger I always wished that everyone in the world had my disease for a week or two so they know what most of us have to deal with, I still sorta wish that, but not as much.

Cause maybe then when people didn't take their pills, they'd sympathise with me and not make fun if me for going to the bathroom a lot.


But I am so happy when Law and Order SVU mentions CF, they've mentioned it like 5x and one if which had a whole story revolving around a CF daughter who was extremely ill. But it's still not enough.

 

[Nervous1]

Understand You Completely but an additional perspective

Hi Enzo,

I completely understand where you're coming from and your frustration. I feel this way at times also. I have similar frustrations about the amount of investment in people with "lifestyle" dependent disease. I spend so much time trying to stay healthy, while people who make no effort whatsoever to maintain a healthy lifestyle have every medical resource at their disposal. And, where I live we have socialized medicine which means that I am paying for their care through my taxes. However, since I have an orphan disease I pay for much of my medical needs out of my pocket.

Just to put things in perspective though, I have non-CF bronchiectasis. Thus, I "wish" I had CF because then I would have access to CF centers and all the CF treatments.

My real wish though is that no one had to suffer with CF or similar diseases!!!!

 

[nmw0615]

Hi Enzo,

I get what you're saying, but I disagree just a little bit. I have absolutely no jealousy over the other diseases, because to have a disease, any disease, is horrible. I wouldn't wish CF on anyone else just as I hope others wouldn't wish their disease on others. Where I agree with you is the jealousy and frustration over the lopsided funding and recognition CF has in comparison to the other diseases. It is a relatively unknown disease and because of that, I have a more difficult time trying to raise money for it. I have to explain what the disease is, I have to explain that I have a handicapped parking pass for a reason, I have to explain that even though I look pretty healthy I am anything but.

Because of the lack of knowledge about CF in the world, I make sure to work extremely hard whenever I can to get the word out. Right now, my current mission is to try and do something with the movie Catching Fire, seeing as everyone will be calling it CF when talking about it on social media. What better way to spread the word about CF than by connecting it to a movie with the same initials that thousands upon thousands upon thousands of people will be seeing? Even if I only get something going in my community, it's something.

 

[Enzo2311]

Hi Enzo,

I get what you're saying, but I disagree just a little bit. I have absolutely no jealousy over the other diseases, because to have a disease, any disease, is horrible. I wouldn't wish CF on anyone else just as I hope others wouldn't wish their disease on others. Where I agree with you is the jealousy and frustration over the lopsided funding and recognition CF has in comparison to the other diseases. It is a relatively unknown disease and because of that, I have a more difficult time trying to raise money for it. I have to explain what the disease is, I have to explain that I have a handicapped parking pass for a reason, I have to explain that even though I look pretty healthy I am anything but.

Because of the lack of knowledge about CF in the world, I make sure to work extremely hard whenever I can to get the word out. Right now, my current mission is to try and do something with the movie Catching Fire, seeing as everyone will be calling it CF when talking about it on social media. What better way to spread the word about CF than by connecting it to a movie with the same initials that thousands upon thousands upon thousands of people will be seeing? Even if I only get something going in my community, it's something.

how do you get a handicap pass? Could I get one? I ask cause you say you're relatively healthy

 

[nmw0615]

I get temporary passes about a month, sometimes a month and a half, before my hospitalizations. For 8 months a year, I don't need the passes at all and would never think to use them. It's only for right before I go in, and even then I use it sparingly.

 

[iefisherman]

I think this has more to do with dealing with our own issues than other diseases. There are more serious conditions that get less media and less serious that get more media. We cant live our lives for anymore than just that...our lives. If you are passionate about the CFF make it heard. If you have your own ideas do what you want with it. I know i'm sick. I know i'm going to die. I wanted to keep working and make a living till it was over, but i got fired due to my illness. I got turned down for medicaid because my folks helped me pay my bills. No income, no insurance, no help as of now. I am not jealous of anyone. I refuse to lie or streatch the truth on anything. I live my life with no regrets and have done more "living" in my life than 98% of the average person. Take a look at who you want to be, and be it. It's worth more than any medicine or procedure out there. Stay strong enzo!

 

[cgerhardt]

My 8 year old told me he doesn't understand why everything has to be for cancer. ( At his school all year they raise money for relay for life). He went to the nurse and asked why wasn't there more for CF. I was proud of him for speaking up. The nurse started doing research to get more awareness out, books for kids etc. You are not alone.

 

[Nugget1]

Excellent job, by your son. I'm sure you're very proud. My daughter's school does a lot of fund raising for everything else but I find that I'm going to have to be more proactive and "aggressive" to focus their attention to her challenges. I sent letters to everyone in her class to ask for participation in the Great Strides Walk this past June, I wasn't looking for the financial support exclusively but also for a physical showing of bodies at the walk and sadly only one family came to support her, although they and another family made contributions to her team effort for which we are truly grateful. The principal allowed for a poster to be put up and for a piece to be put in the weekly newsletter again that sadly didn't stir any interest. This coming school year I intend to ask the principal if he would allow some kind of fund raising to take place during the month of May as that is CF Awareness month. He can decide what manner in which to do this that he thinks is best, but I'm looking for a coin gathering jar or setting the classes to challenge each other to raise the most funds. She is the only student to date with CF and her district requires 40 hours of community service to obtain a diploma starting in 9th grade. Her fellow students would know the person for whom they are working toward a cure. Nothing better than a personal connection for a cause.

 

[gunelle]

I do not wish to have cancer, and I am not jealous of people who have it, but I do understand your point of view. In my country, there is much focus on breast cancer, and everyone wears the pink ribbon when the month of breast cancer awareness is, and I must admit that I have felt pangs of jealousy, like why can't they wear purple ribbons for CF? The awareness is so limited, and it's a shame. But I would rather have my CF than breast cancer...