Less than helpful responses

SheZAAM! · Post by **SheZAAM!** » Mon Jan 26, 2009 3:35 pm

OK.....*rant on*

I've seen enough of these type of responses that I need to say something....

When someone is struggling with OSA and/or xPAPing, it is NOT helpful to say,

"Get your life insurance paid up"
"Prepare a will"
"Let your family know that you'll be dead soon, so get your affairs in order"
Etc.

All this does is drive people away. This post is a perfect example: viewtopic/t38040/I-cant-get-myself-to-u ... chine.html

I was in this person's same spot 3 years ago when I had a sleep study and was diagnosed. I came home, cried and vowed to loose weight and therefore my OSA. I went to Weight Watchers, lost 20# but not my OSA. Since I wasn't sleepy back then, I blew it off.

Fast forward three years to a very sleepy woman. This time I got my study, & CPAP and am now feeling much better.

I've worked with alcoholics/addicts for 15 years. Nobody tells them, "you keep drinking and you'll die." because they already KNOW that. AA is founded on alcoholics helping eachother, mostly by telling eachother what worked for them, then letting them decide to use the knowledge or loose it.

If I had come in here in the past 3 years, that kind of response would have pissed me off and driven me away. I would have missed out on all the help, compassion and fun that I've had in the past 6 weeks.

So next time you want to "encourage" a newbie, think if your response is truly helpful or not.

*/rant off*

skittles · Post by **skittles** » Mon Jan 26, 2009 3:40 pm

Ever hear of tough love?? I was dx with breast cancer 9 years ago --

I could have cried, thrown things across the room, cussed out the doc and everyone else. Sat in a corner and had a pity party.

Did I do any of that -- NO

And that is why I am here today --

OSA is a piece of cake compared to chemo, and radiation.

I do not feel sorry for people who feel sorry for themselves.

Skittles

jnk · Post by **jnk** » Mon Jan 26, 2009 3:52 pm

Thanks for your post. I agree wholeheartedly with the SPIRIT of it. But . . .

Some of us have benefitted from a bit of a swift kick in the pants when it came to taking our therapy seriously. And many newbies who come here DON'T actually understand their life is at stake, because the doctor(s) failed to make that clear to them.

I agree that being nice is good, and the old 'catch more flies with honey' thing. But just as all kinds of people come here for help, there are all kinds here offering help. Some offer help with a polite word. Others have their own colloquial styles and common-sense plain-talk approach. Hopefully it doesn't run too many people off, since, on a board, they can pick and choose which style does it for them.

This question of approach was addressed quite artfully, in my opinion, in the old 2x4 poll by carbonman that is often joked about here because of how succinctly it raised many of the same points and how some were offended by the post's title:

viewtopic.php?f=1&t=35791&st=0&sk=t&sd=a

Goofproof · Post by **Goofproof** » Mon Jan 26, 2009 4:04 pm

Too many come here looking for pity instead of help. I don't want anyone to not get help, but swimming in De-nile isn't going to make you any better. You have to do what is necessary to make this work, or fast the fact you are making your life worse, but not that you have the reason (Sleep Apnea), you can have a treatment that helps you body overcome the damage it's causes over the years.

Today is the first day you can improve your life, pity doesn't improve it, you have to make up your mind you want it to change. People need to know if they keep going down the road they have been traveling for years it does end, and the drop-off is steep, and a long way down. Let someone pull you out of De-Nile and help you to the bank. Jim

jules · Post by **jules** » Mon Jan 26, 2009 4:11 pm

I was also thinking of carbonman's 2x4 post too. Glad jnk posted the link to it so I don't have to find it.

For those that want the pity party, I can't do this without my doctor approach, I might suggest they join apneasupport.org. Don't worry about getting help with your settings there or someone to look at your data, as they won't allow it but they will allow you to have a pity party and let your doctor do ALL of it.

For those who want to be actively involved in "their" treatment, stay around and roll with the punches here.

We face people with denial every day here. Sometimes it is on the forum; sometimes it is in chatroom. We get people in chat sometimes who want our permission to quit.

It doesn't do any good to suggest over and over masks for a person to try when they have a problem with anything on their face and haven't faced that issue as a recent chat visitor indicated.

We have people who come here in the "fog" and got screwed over by their docs and DME's. We can't undo the wrong done but we can get them moving in the right direction.

We can only hand hold so much. If you quit therapy, you have given yourself a shorter life. Some of us have had damage (permanent) because of bad or lack of treatment even though we had done the "doc" route. Sometimes the only "sane" approach is the 2x4 approach and we have some posters here who will use it. So be it; they have the right to post it.

I wouldn't want to even begin to equate "addiction" with "non-compliance".

Wulfman · Post by **Wulfman** » Mon Jan 26, 2009 4:43 pm

After having seen (by many of us) quite a few of those types of posts over the years, I think the words that push some of our buttons are "CAN'T" and "HATE" with regard to this therapy. I think it would be easier to hear these words coming from children, but these are "adults" that are ranting and acting like spoiled children. And, for some of us who, when we were growing up, got to take a "trip to the woodshed" to get our attitudes adjusted, it can be a little much.

TLC (compassion) and 2x4s each have their place and will both work when used accordingly.

Den

nobody · Post by **nobody** » Mon Jan 26, 2009 5:18 pm

Quite a lot of it is childish behavior on both sides. I don't condone it, but I don't see much point ranting about it either since there are all types of personalities here. The only thing we all definitely have in common is sleep apnea, so that leaves a wide range of whatever else...beliefs, ideas, personalities, etc On such a large and heavily trafficked group you take the good with the bad, or take what helps and ignore the petty quibbling and jabs. You need to have a thick skin on the internet in general and to be honest, with this being such an open forum, I'm surprised at how civil it is most of the time...at least by comparison to what I've seen elsewhere on mostly open forums (utter chaos, flame wars). The best thing you can do take care of your own behavior. You treat newbies in the way you think is best and hope that they will take whatever advice given in whatever manner works the best for them.

DoriC · Post by **DoriC** » Mon Jan 26, 2009 7:04 pm

My experience here has been the only thing that has kept me going in my determination to give my dear husband the best quality of life he so deserves. So many have reached out a hand when I needed something to hold on to, and I've also gotten a couple of 2x4's come my way when I started to get anxious and over-analyze everything. We have a wonderful team of doctors who take care of all our other medical needs, but who know zilch about sleep apnea except that if left untreated it will shorten your life. My husband is the kind of guy who likes a challenge, so when our family dr told him that 50% of his patients succeed on cpap and 50% don't, my husband straightened up and said "watch me make it 51%" who succeed"! He saw his cardiologist last week and was given a clean bill of health and a good slap on the back for sticking with the therapy. So this forum has something for everyone .

BeanMeScot · Post by **BeanMeScot** » Mon Jan 26, 2009 7:19 pm

I don't think many people understand the damage they are doing to themselves when they decide they "can't" do CPAP. They think since they are not currently dying, that it won't hurt them. They need to know that it doesn't work that way and they are taking serious chances with their health when they refuse to stick to their therapy. If they still choose not to do the therapy, at least they can't complain that they don't know what will happen.

swcompassionate · Post by **swcompassionate** » Mon Jan 26, 2009 8:26 pm

Because I am a social worker my thoughts are this, everyone is different and everyone is going to respond to different types of responses. Some do need the swift kick in the butt but a majority of people that I come across just generally want some information and want support when they are going through a really tough time especially the adjustment phase. I am still going through the adjustment phase and even went through a two week break to just get my attitude in a better place about therapy and now I sleep every night with the CPAP but not through the night yet. I think people just need to know that someone else has been there, can relate to how crazy the sleep deprivation feels as you get adjusted, and need support. For those of us with anxiety, whom I happen to be one, communicating ideas of you are going to die etc, can be really scary, then it makes the person not sleep with or without the CPAP. I believe that there is a way that all potential side effects of sleep apnea or anything else in life can be communicated clearly and supportively. Just my two cents.

Maria

Debjax · Post by **Debjax** » Mon Jan 26, 2009 8:49 pm

Yeah, I've seen a mixed bag. Most of the responses I've received here have been most helpful, others...well....let's just say that sometimes we're looking for information from others that I know have found a solution to the question, but then there is one who just gives a blunt..."take the fun out of life, your life is more important than fun" response. Ya know, CPAP does not mean we have to give up things we like or that are "part of us". There is generally a work around for almost everything.....

I personally am put off by those blunt ...grab your ankles, your going to die types of responses. Perhaps we could be gentler on the first response, and give productive responses, then if the panic attack continues, get tougher then. There are far gentler ways of telling someone the risks they take not using CPAP....we don't have to hit 'em with the stick right away.

Keep in mind that for many of these folks, there are phobias involved. I don't know if any of you have phobias, but they are not reasonble and a simple kick in the pants does not get you past a phobic problem. My phobia is spiders, any size, any type. I understand how someone else with a phobia may be feeling, if that phobia is something like claustrophobia, that mask on their face is truly terrifying. I"ve been desensitizing my husband for weeks now, getting him ready for his "turn at the hose". Sometimes those folks that chime in on the panic attack, pity party, whatever you want to call it...sometimes they are just looking for encouragement...someone else who has been there to tell them, hey you CAN do it, we're here to help....

swcompassionate · Post by **swcompassionate** » Mon Jan 26, 2009 8:54 pm

Hey Deb,

Just wanted to say that I hope your husband is successful with his desensitization process and is able to adjust with few problems. Will be keeping him and you in my thoughts.

Maria

elg5cats · Post by **elg5cats** » Mon Jan 26, 2009 9:03 pm

As a fellow SW, I have to say for some it's gentleness that paves the way to assistance and for other's it paves the way to be manipulated. Soon after being degreed, out of my own despair and mandate to help someone, I took someone to the window, said look over there, if you don't change your decisions that's were you will be in about 3 days........the over there was a very unsafe/frightening place to be.........That woman called me every Christmas to say "thanks," my boss only comment " I heard you had a frank chat with Ms.? Wasn't fun to pull out the 2 x 4 but it worked when hand holding did not!!!! I think it's different approaches for different people and different approaches for the same people on different days. Everyone has a boil on their skin and what lances it for one doesn't do the job for the other or some combination of both gets the job done...........An open mind, with many approaches will lead to the the self determination we all possess and will use as we choose to filter the input from others!!!! Use the tools you are most comfortable with, have tolerance for those who have a different approach, and encourage all to make independent decisions...........even if it offers death at some point along the way!

Debjax · Post by **Debjax** » Mon Jan 26, 2009 9:08 pm

swcompassionate wrote:Hey Deb,

Just wanted to say that I hope your husband is successful with his desensitization process and is able to adjust with few problems. Will be keeping him and you in my thoughts.

Maria

The really good news is that he was able to get some sleep with the mask on during his titration Friday night. Not sure if it is enough yet, the doc called today and wants hubby to call him back...given that it was the doc himself and not the office staff that called him, I suspect he may have to go back again. We'll see tomorrow. I really think that watching me sleep with mine the last 6 weeks, and the huge difference it has made for me, has helped alot in his own determination to make it work.

tomjax · Post by **tomjax** » Mon Jan 26, 2009 9:16 pm

Sheeezam(?),
If you prefer the touchy feely approach and want to accept invitations to pity parties, then do so...
Sometimes a different approach seems to work better.
I still advise to get insurance paid up if this is the persons choice.
Tough love works better for some.

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Humidifier

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Machine	Mask

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