Originally Posted by Shezian
In other words why don't we hear people talking to us about it in social situations? Could it be, because people just get on with there lives and just tolerate it?
That's one reason. Another is that for many/most healthy people, listening to/about suffering is an uncomfortable situation. Heck, I'm a painee, and there are times I get uncomfortable and don't want to hear about it anymore either. There are appropriate times & places for talking about it - they're called support groups. There are also inappropriate time & places, and they're called parties and other social functions. I'm sure I'll catch some flack for that position, but that's what I've learned, that's what's been written by many of us, and that's part of the stigma. Other than "Movies of the Week" (a.k.a. "Disease of the Week") you don't see a lot of mention in movies/television either. How many of the medical conditions on the index page
do you hear people talking about in social situations? Maybe a few; there are probably some you've never heard of either. I know I hadn't before coming here, because they don't affect me personally (see below).
With this assumption in mind, is it possible, this disease can be managed and therefore live a production and active life.
That's what we've been saying right along. Do you know what a bell curve is? Nevermind, I'll trip myself up trying to explain it that way. Let me put it another way... out of all the people who have PN (however many that is), most
fall within the category of having it progress to a certain point and then stop, and they learn to manage and live with it, and get on with their active and productive lives. There are smaller groups at each end of the spectrum: At one end is a small group who reverses their PN to some extent or other, heal themselves, and you'll never hear about it (unless they posted something here or elsewhere, but as mentioned before, people who get better don't post/talk about it; it's a non-event to them). At the other end is a small minority who continue to progress, suffer worse symptoms, and become debilitated. It's this latter group who often find their way to support groups. This actually happens with a lot of other medical conditions as well - back to the index page...
If there was huge suffering as a result of PN, (and l know there is as l am suffering too,) then PN would get the attention it deserves.
After telling people that l have PN, most have never, ever heard of it.
Make me wonder how common it is?
Not necessarily. How much do you hear about chronic pain? If I sent you to some awareness sites about chronic pain, how many people it affects and how badly, how it is ignored by society, etc., it would blow your mind. People with PN are a small minority of those with chronic pain; most (the 3 largest #s of people) consist of lower back pain
(that may or may not require surgery, but the surgery fails so often they have a name for it - Failed Back Surgery Syndrome
), chronic headaches
(the kind that keep people from functioning), and Fibromyalgia
(another little-understood but painful condition). Chronic pain doesn't get the attention it deserves either; not the kind
of attention it deserves, anyway - headlines about drug abuse and bad doctors sell more advertising time/space than those about chronic human suffering. Catastrophic events are sexy; day-to-day agony is not, but I digress...
You may, but it may take a while. Did you get it before you had PN? Do you get other conditions & diseases that don't affect you personally? Probably only if you know someone who has them or you've seen mention on some movie of the week or something. A lot of diabetics could tell you about PN, but not all diabetics (like those in my family) get it, so that's no guarantee.
I'm not saying any of this to make you feel bad or guilty; it's not about that. It's about being human. As humans, we tend to think about things that affect us personally - no matter what they are. We can't constantly be thinking or worrying about everyone else's problems; that's not healthy either. Now that you have PN, you're thinking about it a lot because it's affecting you personally. But as MrsD pointed out (and I've mentioned before) obsessing about it is not healthy for you or the people around you. Learning is knowledge, and knowledge is power
, so by all means, learn all you can, do/use what you can, and get on with your life; it is too beautiful, rare, and precious to waste, not to mention the negative effect/impact it can have on those around you.