Is OSA socially unacceptable?

[carbonman]

Here's a thought - don't be so frickin' ridiculous about your CPAP machine!!!!!!!!!!!!!!!! B.

.....whoa......whoa......easy big fell'a.......

just curious about others thoughts.

[mindy]

.....whoa......whoa......easy big fell'a.......

Teehee - Babs a "big fella"?

m

[Captain_Midnight]

Carbonman asks a good question...about the social impact of being a 'pap'er.

I'll tell anyone who will listen that I have OSA, and that I have a PAP machine. Some folks are fascinated, others are not interested. Only a few are offwardly put.

I believe that the social implications of xPAPpery are evolving. As more is learned about the prevalence of OSA within our population (a figure I expect to rise significantly), as well as the connection of OSA to a multitude of other health issues, our condition becomes more familiar and likely more personalized (as friends and family members become diagnosed.)

Looking toward the future, OSA and related therapy will be commonplace in our discourse, and will be highly accepted.

I just hope nobody wants to organize apneic patients into groups of "victims" or "disabled". That would absolutely kill our image and acceptability would be little more than (unneeded) pity. No thanks.

Regards all - -



.

[Chronitia]

At work...it's very easy. There are a ton of hoseheads and spouses of hoseheads, and none of them are the slightest bit shy about talking about it. Most of the spouses had a hard time convincing their SO's to actually get it taken care of, so they are happy to see other people taking it seriously.

In terms of dating/social life. The thing is halfway under my bed anyway. I've only had it for a week now, and I just broke up with my g/f a month ago, so that hasn't really been an issue yet. If I were still with my gf, I would use it without any hesitation. The next time a girl spends the night who doesn't know me too well...I would not use it, but I also would not try to hide it. If she asks, I will tell her, if she doesn't ask, I will not bring it up.

[OldLincoln]

I think a lot of people don't really know about OSA. Like a thread about the poor among us, I think a lot of healthy folks blame things on lifestyle. If you are overweight they will think "well if you weren't overweight you could breath". Or they'll find some reason to challenge or something simple to fix it.

I don't elaborate when talking about OSA, I just say I have a breathing machine that forces oxygen into my lungs at night. If they ask why I tell them because I stop breathing. I never mention OSA, etc. and they seem to accept that.

My wife has had 2 neuromuscular diseases for many years but you can't see it - like amputated legs, so folks used to tell her to exercise and it will go away. I have to draw a picture of the nerves burned in two before they understand that the muscles just don't get the signal to move. No amount of exercise will fix that. It's only now that she walks very weakly with a cane (again - visible) that people try to understand.

[Julie]

Hi, I think the 'problem' if there is one, might be just that a lot of people don't particularly like talking about any (one else's) personal physical stuff - a lot of old jokes are based on people at parties zoning out listening to someone's description of their surgery, etc. It's not necessarily OSA itself that's the issue, just that, especially if you're e.g. young and have no medical problems yet, hearing about what to us may be our fascinating 'conditions', may not be so fascinating or cool to them. And it's pretty understandable I think. Sure, if the issue somehow comes up, if there's an appropriate time to talk about it, go ahead, but I'm no more interested in hearing about someone else's medical stuff necessarily than I expect them to care about mine.

[illinigal]

I am so glad I decided to read this post tonight ! I needed a laugh and got it ! Yes..there is a lot of good advice thrown in...but I had to laugh at Wulfman and wonder....are you saying we should come out of the closet? And Babette..I am plain scared
I had the exact same thought..."or are you just happy to see me !? " I think your attitudes are sliding down here to my part of Illinois....I have always thought that 2 cpapers dating could easily use the line...I'll show you mine if you will show me yours..
( masks that is ) ..or...what a big hose you have....or...gee..I've never had a 10 footer before ! .now I have gone overboard..

Illinigal..

P.S. I think that could be post in itself..famous lines that could be related to CPAP !!

[kteague]

Some people by choice make their lives an open book and don't give a big cahoot who likes them or anything about them. Others are more private, and wouldn't want to show you the posts in their mouth for their upcoming dental implants either. Being private is probably simply that.
Some make clear distinctions between close friends and coworkers, and purposely keep personal business out of the office. Add to that what Snoredog said about possible repercussions, and it's easy to understand why a conversation about what happens in one's bedroom may not be welcomed as worktime conversation.

As far as stigma goes, SA is generally associated with snoring, which like drooling, is much more common than most admit to. Our bedroom is one of the few places where we can choose who we trust their love enough to let them in and see us in all our "glory". Takes all kinds to make the world go round - open or private - not really a right or wrong in my eyes.

I personally take every opportunity to mention sleep apnea when I think the other person could benefit. I do make it a point to not try to initiate that conversation in a group setting as the response will likely be more guarded.

[DreamDiver]

OSA may be indiscriminately lumped into the category of "Problems Like Piles" rather than the more correct category of "Problems Like Eye Glasses." I got my first pair of glasses when I was 25. I was smiling for a week. People would ask me why I was smiling, and I would say "I just got glasses." They'd often nod in understanding and the conversation moved on to the next topic because everyone knows what glasses are for and that they are a useful tool for 75% of adults.

How many of us have entered a conversation with 'How are you,' not really expecting a detailed reply?
"Well, my piles are swelling, and my lumbago is back. I probably shouldn't o' shot my dawg last night, and Ma's in the hospital with..."
It's almost rude to say, "I didn't sleep well last night" to anyone but those very close to you.
We really didn't want to know. We were being polite in asking. So the polite response is, 'Fine, you?'

What we really need are some PSA's like this:
https://www.youtube.com/watch?v=BTLj_3R0-2g

Or the new ring tone that's so popular:
http://decentx.com/news.asp?id=679

[Babette]

Okay, my previous post was overly harsh. I do apologize. I sorta have a background story for it, which I PM-ed to a forum member who chastised me, and I share here:

As for my post on the socially acceptable thread - well, I came off more frustrated than I meant to. You're right, I overreacted.

It seems the last few days there's been a lot of whining going on about cpap therapy, and I just lost my temper. I was offended by the question. No one asks if it's socially acceptable for someone to have diabetes or any other medical problem - why would anyone ask if it was socially acceptable to have OSA? It just boggled my mind.

I think if I was to express all my thoughts on the matter, I would agree with several of the posters points:

1) It's not polite to winge on about your medical problems to people. Period. That's why we have the forum - so you CAN winge on. )))

2) It can be dicey discussing your medical problems at work. People do get discriminated against, and in the States, there are laws about that. I've advised several forum posters to contact their HR about discrimination issues. I used to work in HR, and specifically, at a non-profit devoted to assisting people with mental and physical disabilities. It's a subject near and dear to my heart.

3) The more comfortable you are with your therapy, the more comfortable those around you will be. I don't treat my therapy like it's a disability 98% of the time. I DO sometimes have to explain some of the symptoms of my therapy - recently, I had to tell an old boyfriend why I don't remember much of our dating life from 20 years ago - because I've been killing off brain cells with apneas for more than 20 years. )))))))))))) Another recent instance - I had to explain to someone who just met me that I DID know all about the joys of camping out at Fort Langley, but that due to my OSA, I had been feeling poorly the last few years and hadn't been there. That's why he hadn't met me before now. And now I don't camp because I haven't bought the fancy expensive battery, and I'm not really 100% sure I want to anyway. ))))

4) I think people should be advocates for their own therapy, and spread the word to other people, when they get the chance. I sometimes can just TELL someone is on CPAP therapy. I don't know how I do it, but I can. I told a postal employee who was helping me that he was on the hose, and that he wasn't getting good therapy and he needed to check out the forum. He was amazed, and agreed with me. ))) Honestly, I can't remember how I knew, I just KNEW. )) I talk about my therapy to people, but I don't winge on about it. I explain to my assistant - last night was a bad night - and that's all she needs to know. I say "I'm playing with my therapy" and she understands what that means.

Cheers,
B.

[jnk]

B.,

I think very few, if any, were truly offended by your "ridiculous about your CPAP machine" post. After all, if you can't exercise a little hyperbole in a forum, where can you, right?

So please be assured that EVERY time you post, we ARE always happy to see you today.*

jnk

* Or maybe it's just the avatar.

[Wulfman]

I am so glad I decided to read this post tonight ! I needed a laugh and got it ! Yes..there is a lot of good advice thrown in...but I had to laugh at Wulfman and wonder....are you saying we should come out of the closet? And Babette..I am plain scared
I had the exact same thought..."or are you just happy to see me !? " I think your attitudes are sliding down here to my part of Illinois....I have always thought that 2 cpapers dating could easily use the line...I'll show you mine if you will show me yours..
( masks that is ) ..or...what a big hose you have....or...gee..I've never had a 10 footer before ! .now I have gone overboard..

Illinigal..

P.S. I think that could be post in itself..famous lines that could be related to CPAP !!

YEP! If you have the guts to wear panty hose around your head at night to keep your mask on, you definitely need to come out of the closet.

The CPAP humor has come up frequently.

our-collective-cpap-wisdom/more-CPAP-humor.html

Den (don't need a 10-footer.......my 6-footer does just fine......)

[echo]

OSA may be indiscriminately lumped into the category of "Problems Like Piles" rather than the more correct category of "Problems Like Eye Glasses."

My little sleep deprived mind read that last one as "Problems Like Glass Eyes" I was thinking, WOW, do people really have those and that must REALLY be a difficult subject to broach

I think what carbonman was originally trying to say is : Is DISCUSSING OSA in public socially acceptable?

I think that this IS a relevant question. How do we go about breaking down stereotypes and educating others? It used to be that T2 Diabetes was a "fat person's disease"... no one talked about HIV/AIDS because then it meant you were gay and using drugs (I mean that was the perception in people's minds)... all of these things were all originally NOT socially acceptable to discuss in public because of the STIGMA associated with them and LACK OF KNOWLEDGE about them in the general public. Even being in a wheelchair was once a stigma, but over time people became more educated and aware. I think it is the same with OSA, now. In time it will be like "Eye glasses" (and hopefully not "glass eyes" )

Note I'm not talking about whinging in public, I'm talking about educating the public.

And I agree with all your points Babs, and ditto to what jnk just said

[Ms Piggy]

I don't think we need to take peoples attitude personally. It's just that a lot of people want to talk about their illnesses and problems ad nauseum but don't want to listen to anything longer than one sentence about anyone else's. That's just Just the way it is it seems to me.
On the other hand if you never say anything about it you don't find fellow cpapers. Maybe it's best to rely on like minded people on the forum.

[carbonman]

I think it has been very enlightening discussion.
Personal thoughts/feelings,
personal life stories,
people thinking,
cold, hard, reality thoughts,
great humor,
hose humor,
anger and frustration,
great ideas on dealing w/OSA in life,
both mine and others,

no apologies needed here.