Family reactions / stigma

Has anyone dealt with the stigma of CPAP among your family or friends? I spoke with my mom and mentioned I'm struggling to adjust to therapy and her reply was a dismayed, "Oh, you're doing that CPAP thing?!" As if I'm letting her down by having yet another health problem, and have slipped a few more spots down her list of Healthy People I Can Depend On.

I know I shouldn't let it bother me. I'm just wondering if anyone can empathize.

added for context: Her health has been declining the last few years and I know it's hard for her to be moving in with me and giving up her independence. I also know she had a tough time caring for both my dad and her mother in their final illnesses and just wants someone to take care of her for a change. The woman is worn out. My getting Covid and subsequent issues has been a big worry for her. My sister is also dealing with long Covid and a major health issue right now, so I'm all Mom has.

KittyMom22 wrote: ↑

Tue Nov 08, 2022 8:19 am

Has anyone dealt with the stigma of CPAP among your family or friends? I spoke with my mom and mentioned I'm struggling to adjust to therapy and her reply was a dismayed, "Oh, you're doing that CPAP thing?!" As if I'm letting her down by having yet another health problem, and have slipped a few more spots down her list of Healthy People I Can Depend On.

Been there, done that, and have the scars to prove it.

CPAP has an awful reputation among people who have never even seen PAP machine. And OSA has some pretty terrible stereotyping as well. When I was starting out I got really sick of people reacting to my telling them of my diagnosis and the beginning of my therapy. Even today there are some relatives who just can't believe that not only me, but also my husband are PAPers, and are actually reasonably happy PAPers.

Hubby has an identical twin who outweighs hubby by about 30 pounds. And the twin? He has classic OSA symptoms: Loud snoring; falling asleep in front of the TV; inability to sleep well lying down; really cranky and short tempered during the daytime. Hubby has been trying to get his twin to do a sleep test and accept that his apnea ought to be treated. Twin says, "But I don't wanna have to use a CPAP like you do."

To be honest, a lot of people have met someone who struggled at the start of CPAP (including myself). But they seldom follow up and find out that not every one who struggles with CPAP abandons it, and those of us who stick with it usually become reasonably happy PAPers who don't want to sleep without our machine because in the end, we do understand just how much we're benefiting from it.

KittyMom22 wrote: ↑

Tue Nov 08, 2022 8:19 am

Has anyone dealt with the stigma of CPAP among your family or friends? I spoke with my mom and mentioned I'm struggling to adjust to therapy and her reply was a dismayed, "Oh, you're doing that CPAP thing?!" As if I'm letting her down by having yet another health problem, and have slipped a few more spots down her list of Healthy People I Can Depend On.

Well, since it's HER FAULT (genetics) that's caused you to be on CPAP, feel free to lay the blame where it belongs.

KittyMom22 wrote: ↑

Tue Nov 08, 2022 8:19 am

I know I shouldn't let it bother me. I'm just wondering if anyone can empathize.

We're all surrounded by people that aren't caring and supportive, one has to deal with it.

"that CPAP thing" will be a big boost to YOUR health, and ability to function.

Don't see it as a stigma yourself, any more than wearing eyeglasses is, and tell other people proudly that you slept well because of a machine.

This is an area of life in which I am a firm believer in the preemptive strike.

I look for every opportunity to tell family, friends, neighbors, doctors, strangers on the street, and phone telemarketers who sneak through how much I enjoy and appreciate the benefits of PAP.

I am amazed at how many times that has removed the stigma for someone else previously unwilling to talk about his or her use of PAP or a loved one's use of it. Sometimes they look away for a moment before deciding to admit/acknowledge it. But more often than not I am thanked for talking about it, and then the conversation moves on to 'Is there any chance you would be willing to speak to my father/mother/spouse/sibling/child about your good experience and to pass on a few pointers?'

I have educated more dental hygienists and nurses than I can count, and a few doctors have perked up and wanted to know more. But the gratifying thing is when someone I never would have imagined tells me later that his or her own CPAP has been taken out of the closet (literally and figuratively) after my talking about my experience.

I don't expect everyone to become a CPAP evangelist the way I am. But we can each play a small part in removing the stigma associated with it whenever opportunities present themselves. Our attitudes and actions about it can save the lives of people around us. Especially so in this era of commercials and ads that denigrate and misrepresent the therapy so badly.

My husband is super supportive. He encouraged me to get it and he appreciates the benefits he is receiving from me having it. That being said he refuses to get tested for one himself. ‍♀️ drives me batty !

babydinosnoreless wrote: ↑

Tue Nov 08, 2022 9:28 am

My husband is super supportive. He encouraged me to get it and he appreciates the benefits he is receiving from me having it. That being said he refuses to get tested for one himself. ‍♀️ drives me batty !

He obviously loves you more than he loves himself, so don't give up on him.

palerider wrote: Well, since it's HER FAULT (genetics) that's caused you to be on CPAP, feel free to lay the blame where it belongs.

No it's my fault for being fat. She doesn't have it, nor anyone else in the family.

KittyMom22 wrote: ↑

Tue Nov 08, 2022 8:19 am

I know I shouldn't let it bother me. I'm just wondering if anyone can empathize.

We're all surrounded by people that aren't caring and supportive, one has to deal with it.

"that CPAP thing" will be a big boost to YOUR health, and ability to function.

Don't see it as a stigma yourself, any more than wearing eyeglasses is, and tell other people proudly that you slept well because of a machine.

Yes, I'm getting there. I just wish I could sleep well with it. I had two nights that I slept through and had some energy in the morning. It's been 3 weeks so I'm still trying.

lazarus wrote: ↑

Tue Nov 08, 2022 9:12 am

This is an area of life in which I am a firm believer in the preemptive strike.

I look for every opportunity to tell family, friends, neighbors, doctors, strangers on the street, and phone telemarketers who sneak through how much I enjoy and appreciate the benefits of PAP.

I am amazed at how many times that has removed the stigma for someone else previously unwilling to talk about his or her use of PAP or a loved one's use of it.

Once I get to the point that I don't actually hate it myself, I'll try to do that. lol.

You're a very good evangelist.

lazarus wrote: ↑

Tue Nov 08, 2022 9:44 am

babydinosnoreless wrote: ↑

Tue Nov 08, 2022 9:28 am

My husband is super supportive. He encouraged me to get it and he appreciates the benefits he is receiving from me having it. That being said he refuses to get tested for one himself. ‍♀️ drives me batty !

He obviously loves you more than he loves himself, so don't give up on him.

So typical.

Be aware that you are going through the grieving process, mourning your pre-covid, pre-OSA diagnosis self. Are you aware of the 5 stages of grief Kubler-Ross identified:
1. Denial
2. Anger
3. Bargaining
4. Depression
5. Acceptance

You can be in more than one stage at a time, and you can get stuck in any stage, but I would guess some depression right now. And during depression, we can take on what negative things others say about us.

It's important to understand what other people think of us is none of our business. What is important is what we think of ourselves. You mention being overweight "caused" your OSA. Well maybe your OSA caused your weight gain, because OSA messes with your hormones, particularly blood sugar and hormones that affect appetite. So perhaps this is the first step in taking charge of your health, improving your hormone function to help you be successful at losing weight. So you are taking charge and doing something positive for your body. That's a good thing, not something to feel sad about.

Even when we are adults, parents have enormous power over us and know exactly what buttons to push. I was visiting my mother and wanted to buy some yarn from a local yarn store for a knitting project. My mom made an offhand remark about how much money I was spending on yarn (MY hard-earned money that I specifically budgeted for my knitting hobby!) and it sucked all the fun out of the project. I tried to be mindful that my mom grew up in the depression and was very frugal (in the extreme), but it still has lingering effects to this day, when I feel like I have to carefully shop to make sure I'm not spending "too much" on my knitting. And I still resent this (she passed away 22 years ago!) for taking out some of the joy, while I watch my knitting friends spend freely on this hobby and get so much pleasure from their purchases. I always feel that I have to apologize (to whom?) for spending ANY money on a project. Thanks, mom!

All I can say is don't let your mom do this to you. You are doing a wonderful and positive thing for yourself. Don't let her have this power over you. Don't discuss this with her or anyone else who might be critical. You deserve support, not criticism.

Fat is also hereditary--so it's still on your mother, even if she is not fat herself.
My genes made my sons bald; but I am so fluffy on my head!
Genes are weird.

babydinosnoreless wrote: ↑

Tue Nov 08, 2022 9:28 am

My husband is super supportive. He encouraged me to get it and he appreciates the benefits he is receiving from me having it. That being said he refuses to get tested for one himself. ‍♀️ drives me batty !

Back in the dark days 2010-2011 when I was still working hard on making this crazy therapy work for me, my hubby had the patience of Job in dealing with my multiple meltdowns, screaming hissy fits, and the need for his assistance in kicking me out of bed at 7:30 AM every morning during the First War on Insomnia. I would never, ever have made it to becoming a happy PAPer without his support and significant help in more ways than one. Hubby is definitely a keeper and I'm glad to be married to him. (We celebrated our 38th wedding anniversary this past August.)

It took a while for hubby to come to grips with the fact that his daytime sleepiness was a real issue (for him) and his snoring was getting worse before he got tested. Then his results indicated mild apnea. So it took another 8 or 9 months before I could talk him into going ahead and getting a machine. This was after he had his titration test done and on the day following the titration test he stayed wide awake the whole day and did not fall asleep on the couch while watching TV that night. He also answered question about how well he thought he slept on the patient questionnaire after test with the phrase "Pretty good---better than usual."

Good luck in getting your own supportive husband to (eventually) realize that he too would benefit from a sleep test, and if necessary from CPAP therapy.

KittyMom22 wrote: ↑

Tue Nov 08, 2022 11:16 am

Yes, I'm getting there. I just wish I could sleep well with it. I had two nights that I slept through and had some energy in the morning. It's been 3 weeks so I'm still trying.

Hang on to the memory of those two good nights.

And remember that since you have been able to sleep through the night twice and have some energy in the morning, it is only a matter of time before you do figure everything out and start sleeping well with the mask on your face.

lazarus wrote: ↑

Tue Nov 08, 2022 9:12 am

This is an area of life in which I am a firm believer in the preemptive strike.

I look for every opportunity to tell family, friends, neighbors, doctors, strangers on the street, and phone telemarketers who sneak through how much I enjoy and appreciate the benefits of PAP.

I am amazed at how many times that has removed the stigma for someone else previously unwilling to talk about his or her use of PAP or a loved one's use of it. Sometimes they look away for a moment before deciding to admit/acknowledge it. But more often than not I am thanked for talking about it, and then the conversation moves on to 'Is there any chance you would be willing to speak to my father/mother/spouse/sibling/child about your good experience and to pass on a few pointers?'

I have educated more dental hygienists and nurses than I can count, and a few doctors have perked up and wanted to know more. But the gratifying thing is when someone I never would have imagined tells me later that his or her own CPAP has been taken out of the closet (literally and figuratively) after my talking about my experience.

I don't expect everyone to become a CPAP evangelist the way I am. But we can each play a small part in removing the stigma associated with it whenever opportunities present themselves. Our attitudes and actions about it can save the lives of people around us. Especially so in this era of commercials and ads that denigrate and misrepresent the therapy so badly.

I read all the replies to this post so far and THIS ONE is the one I find most resounding.

I too mention it to people regularly. I tell them how much I love my pap, how much better I feel, how it will improve my health drastically. One acquaintance told me he was at a party and everyone was talking about their pap machines and he couldn't believe it. The more people hear and see it the less stigmatized it is. I mean, think of just how much of a stigma it had with you Kittymom when you first started here! It is important too that people are not kept ignorant about masks and actual cpap machines as well. Some people think its like a giant iron lung machine instead of this petite little doodad on the bedside table, and nasal cushion and pillow options, and even full face options that aren't so unruly.

I had dental work done yesterday (joy joy root canal with a trip back for the crown). The entire time I fought the poor dental assistant who was trying to keep my tongue out of the way. I was trying to keep it still but I told her that I could not help it and it was subconscious. When I am laid back like that, throat (back tooth) and tongue numb it was collapsing into my breathing passages. I have actually had it completely block my airway in the past and it SUCKS. Later yesterday I actually spoke to a dental hygienist acquaintance of mine and told her the story so she could BOLO. She didn't realize it could happen like that.

So remind mom that with properly treated sleep apnea you will be able to help her get along, be more pleasant during the day, and healthier all around for doing so. I keep hoping I can get a more consistent management so the weight will come off easier but I am fighting menopause and other health issues like you are as well. But fingers crossed!

Hopefully you are getting a bit more accustomed to the whole thing every day. It should continue to get easier and hopefully the new mask will help and you may branch out to try other masks that might help you more/smaller footprint. Show her the machine and mask and take away the mystery and remember too that she probably remembers you talking about how unpleasant your ex was while PAPing and is taking that forward to today.

Time for both of you to cut each other some slack and good luck!

KittyMom22 wrote: ↑

Tue Nov 08, 2022 11:16 am

palerider wrote: Well, since it's HER FAULT (genetics) that's caused you to be on CPAP, feel free to lay the blame where it belongs.

No it's my fault for being fat.

Think what you like.

KittyMom22 wrote: ↑

Tue Nov 08, 2022 11:16 am

She doesn't have it, nor anyone else in the family.

They haven't been *diagnosed* with it, many many many have SDB and haven't been diagnosed, because they're not fat old men.