Emily65Roses
New member
Okay, this is just a little pet peeve of mine and I was wondering if anyone else shared it. Obviously there are mild and severe cases of CF. People that go through 30 years before they need much of any medication are clearly mild. Then there are still children that die... clearly severe. But the doctors that say stuff like "Oh well he/she's mild now, but might get more severe as time goes on" annoy me. CF is a <b><i>progressive</i></b> disease. Each case is different, obviously. And there are still, as I said, people that are very obviously mild or severe. But this whole train of thought irritates me. Telling a parent that their child is mild now, but might get severe later is kind of stupid. A more educated answer might be something like "Your child is still young, there's no 100% accurate way to tell how their CF will be. It's a wait and watch type of thing."
They need to remember to tell people to *expect* things to get worse with time. No one likes to hear that, I know. I'm not an optimist, myself (I bet that's a shocker). But I'm not a pessismist either. I'm realistic. I have nothing against people who are optimistic. It does annoy me, though, when people are <b><i>unreasonably</i></b> optimistic. You can be a positive thinker and still be sensible.
I seriously just don't get it. What is the point of calling CF a progressive disease.... and then telling people that their loved one is mild now, but might be severe later on? I get the feeling that people that ask what kind of CF their loved one has want an idea of how their CF will be overall. Not just for right now. So hearing "mild for now" may be getting people's hopes up. Even though it includes "for now," the term "mild" would be what people grab a hold of, because it's the best term in that phrase. I don't see why doctors don't say instead that there's no way to tell early on, and each case is different, and you just have to wait and see, etc etc. I realize people want to know, but sometimes there's no answer.
Edit: And you know it's not even like the doctors can't give hope to the parents. Absolutely they can. Meds are better all the time, treatments, etc etc. Lifespan is always rising. But outright categorizing a child seems a step too far (unless it's incredibly obvious... NO troubles at all... or MANY).
I'm not even sure if this makes sense. But it's been bothering me on and off for a while, and I wanted to ask.
They need to remember to tell people to *expect* things to get worse with time. No one likes to hear that, I know. I'm not an optimist, myself (I bet that's a shocker). But I'm not a pessismist either. I'm realistic. I have nothing against people who are optimistic. It does annoy me, though, when people are <b><i>unreasonably</i></b> optimistic. You can be a positive thinker and still be sensible.
I seriously just don't get it. What is the point of calling CF a progressive disease.... and then telling people that their loved one is mild now, but might be severe later on? I get the feeling that people that ask what kind of CF their loved one has want an idea of how their CF will be overall. Not just for right now. So hearing "mild for now" may be getting people's hopes up. Even though it includes "for now," the term "mild" would be what people grab a hold of, because it's the best term in that phrase. I don't see why doctors don't say instead that there's no way to tell early on, and each case is different, and you just have to wait and see, etc etc. I realize people want to know, but sometimes there's no answer.
Edit: And you know it's not even like the doctors can't give hope to the parents. Absolutely they can. Meds are better all the time, treatments, etc etc. Lifespan is always rising. But outright categorizing a child seems a step too far (unless it's incredibly obvious... NO troubles at all... or MANY).
I'm not even sure if this makes sense. But it's been bothering me on and off for a while, and I wanted to ask.