Educating family & friends

[napstress]

Can anyone recommend a very brief YouTube or written summary about apnea, its treatment, and the consequences of not pursuing treatment that I could email friends and family?

My family is pretty blasé about my diagnosis, and I have no idea how to go about explaining how very difficult CPAP treatment is without carrying on and on and on and on and on about it. I haven't said much about it because I don't know how to begin. I feel they will tolerate a very short explanation; if I go on too long, they will tune out and not hear how hard it is for me and how exhausted I feel. They're not always an empathetic lot, in my experience. (My mother, who is easily succumbs to claustrophobia, is not the slightest bit alarmed at what I must do, night after night. Also, she was puzzled as to why my doctor had a strong reaction against my taping my mouth shut at night when I was still using the nasal pillows! Isn't it a mother's Prime Directive to be invested in her child's being able to breathe?!?! No matter that I'm 46!!! She has opinions about every *other* aspect of my life!). While I wish they might be empathetic, I understand and accept that they likely will not be able to meet that need to the degree I need it. I can get that here, from all of you lovely folk who are dealing with the challenges first-hand. But I do have a strong need for them to know that I am totally depleted, yet persisting in what people almost universally experience as a challenging treatment.

I would like to pack a solid punch in a short amount of time, say 10-20 minutes from a source other than me.

[Lizistired]

Good luck. That sounds just like what I have experienced with "aging". As long as I am inside their bubble, all is good. I've learned to count more on like-minded friends than family for my support. The problem for me is that it causes resentment because they expect me to be understanding of their issues... because that's inside the bubble. But, it's their bubble.

[xenablue]

To be honest with you, I haven't even told most of my friends and family, and unless any of THEM ask me about my CPAP or OSA I say nothing. I don't see any reason to tell them, unless they plan on sleeping with me.

My darling hubby knows all - LOL. In fact I made him wear my mask for a few minutes, with the machine going - just so he'd have an appreciation for what I have to do every night. He's 110% supportive and understanding.

I see no reason to send a broadcast to everyone - most people are uninterested. E.g. - my 33yo son recently visited from Australia - asked me what that 'thing' was next to my bed (with all it's tubing hung on the headboard etc.). I told him it was my CPAP machine - he shrugged, said OK - some of his clients/patients use them. He asked me a couple of basic questions and that was the end of the topic.

If, on the other hand you run into family and friends who are interested/inquisitive then I would be more than happy to explain or answer any questions.

The way I see it is - it's MY issue to deal with just like my diabetes, not anyone else's problem. I don't expect others to eat the way I do, nor make special meals or arrangements for me - I look after myself - it's the same with OSA and my need to use a CPAP each night.

I would rather not get into discussions that might raise my blood pressure and/or glucose due to stress - already tried that once with my non-complient diabetic FIL. It's easier and healthier to just do your thing and look after your health YOUR WAY.

Cheers,
xena

[Janknitz]

No pun intended, but don't hold your breath.

People who aren't going through this just have NO idea and never will. It's like that with a lot of things. You only know your own reality and cannot imagine what others are contending with. And there really is no effective way to "educate" them.

What you can do is tell them what you need from them. If they aren't being supportive, tell them exactly what you need. Use "I" statements like "I need you to encourage me to use my CPAP machine, because it's important to my health". Avoid "you" statements like "you need to be supportive of my CPAP" or "you make me feel uncomfortable about using CPAP" because "you" statements put others on the defensive.

And don't expect a lot of sympathy--at least you can get that here.

I avoid telling most of my friends and acquaintances about the CPAP. It's no secret that I am overweight, and I HATE when people assume that I need CPAP because of my weight "well, maybe you should lose a few pounds . . ." Of course I should, but I will STILL have sleep apnea because of facial structure, so that statement is not supportive, it's dismissive and condescending, whether they realize it or not.

[Pugsy]

I Googled "Dangers of sleep apnea video" and got several hits.

http://video.answers.com/the-dangers-of ... -235266773

This one above is short and to the point. There are others mentioned below this particular video on the same page and since from Women's Health source, relates to women I guess.

I have very poor internet connection so I only listened to the first one with many stoppages to load. You might watch a few of them to see if they express what you are trying to express to your family. The only person I ever bothered with trying to explain what a PITA this therapy is was my husband and he was the one who told me that I quit breathing, so this has been a non issue for me.


Google hits list below. I only investigated the one I linked to above.
http://www.google.com/#hl=en&sugexp=gsi ... b43c7d221c

[trytryagain]

And here I thought my family was the only one that thinks I may be exaggerating this sleep apnea thing. They think I'm a little obsessed with finding the right mask, "just pick ONE already"! I'm going on a bachelorette weekend, camping this weekend. It will be my first time using it away from home. They're all shocked that I'm actually bringing it. Should be fun.
Didn't mean to steal thread, just got me thinking, how nobody really understands unless they experience it themselves.

[chunkyfrog]

Most of the family members I could have shared the news with have, unfortunately passed on--probable victims of their own apnea and/or ignorance.
Wish a few were still around to argue with. . .

[Alicia41964]

I wouldn't count on most people being very supportive! I don't mean to sound like a "downer", but that is what I've experienced, so far. My family doesn't understand why I still nap most days, how I can be so "under the weather" on others and how this OSA can seem to take over your life. I am 100% compliant with my CPAP and have been for almost 1 full year now. I am within the established parameters for nightly numbers, just takes a while for a sleep debt from 25 years to be paid off... Mind you, I applied for SSDI and had my retro check within 3 months. I am also recovering from multiple bilateral pulmonary embolisms as well. Obviously, someone somewhere agrees with my sleep doc and pulmonologist! Here's the kicker. I went to see my primary doc last week for a nasty bout of phlebitis in my leg. He asked how things are going and in telling him, I also expressed my desire to get back to the working world at some point. My brain is slowly becoming a bowl of applesauce. His answer? "Well, why don't you get working again? Just get up and decide to do it!" You all know the look I had on my face, right? Needless to say, I am searching for a new primary physician.