Who do you tell, and when, and why?

[MoneyGal]

Honestly, this is the part of my therapy that I struggle with the most, and I thought it would be great to get some more input.

Who do you tell that you have OSA, when do you tell them, and why do you tell them?

I've been thinking about this a lot lately, for a couple of reasons. One is that I was invited to go out to lunch with my former business partner. But my undiagnosed apnea played a big role in why that person is my former, and not current, business partner. Now that I know that I wasn't really in the driver's seat during the years we worked together, but my undiagnosed illness (or is it a "condition?" What do people say?) was -- do I tell her that?

Also: in a related question, do you think of yourself as "sick"? Or having an "illness?" Or do you have a serious medical condition which you are managing?

It's funny. I will talk to total strangers and every close friend about my diagnosis -- but I get really squirrly with people I don't know that well, or people with whom I have an expectation that I am going to maintain some kind of "professional" demeanour.

Please tell me I'm not the only one who struggles with this.

[Julie]

Well, I suppose it's up to you, of course, but I think the majority of us consider that we do have a "condition" (like diabetes), but it doesn't necessarily have to impact our daily lives (unless it does) and we don't find it necessary to tell anyone about it unless we feel a particular need (as in... "let's get married", or "sure I can work as a night watchman with alternating 4 day shifts" - though that one might be more a matter of your having the sense not to apply for the job rather than anything!). The consensus also seems to be not to feel we have to tell bosses, unless it has already become a known issue that you've been asleep on the job for months, etc. etc.

When it comes to situations like yours, while I kinda got the feeling you might be putting yourself down retroactively when it might not in fact have been the case (that you did such a bad job it was obvious to all), do you think now is the time to tell, e.g. to 'excuse' yourself hoping she'll understand and forgive, or possibly just that you feel guilty (which you should absolutely not do)?

Maybe consider your motives and then decide (and let us know !

[kwikwater]

I"m not sure I know what kind of medical reference to use, but what I convey is that since someone else that had made the discovery suggested that I get tested and subsequently sleep with a mask, it has solved a lot of things. Then I talk about how I wa ssleeping 10-12 hrs at night and taking a2-3 hour nap. After CPAP, my eyes popped open after 8 hours regardless of when I went to bed & I didn't take naps!! That alone makes them turn to a positive viewpoint. They ask productive questions. If their weight, physical tone and age added to stories they might tell about how their spouse and family can't sleep in the same house with them, ...I suggest they ask their Doc!!

As for your former partner, odds are they won't put 2 & 2 together and make the correlation you already know about the time you were in business with them. Let the past be history. Maybe they'll ask you back into something when they see how you've changed!! Be an example!!

Good Luck!!
Kelvin

[SaltLakeJan]

MoneyGal,
I definitely agree with Julie. I talked with a friend yesterday, she told me how boring it was to talk with her sister who insisted on telling the facets of her medical problems. I was in the midst of serious Fibromyalgia symptoms. I hadn't told anyone at work, when another woman told of her on-going struggles with Fibro. Following that, I saw her career stop in her tracks. It may not seem fair, but it is part of reality.

I have Diabetes, and I am doing very well with it. Other than my family, and closest of friends, I don't tell anyone - unless we vacation with them. I believe the friend who told me when he asks how people are, he gets downright cranky when they tell him anything other than something like o.k., or pretty good.

This is just my opinion.

Jan

[mars]

[quote="MoneyGal"]Honestly, this is the part of my therapy that I struggle with the most, and I thought it would be great to get some more input.

Hi MoneyGal

Quote -Who do you tell that you have OSA, when do you tell them, and why do you tell them? End Quote

If the conversation makes it appropriate, or I think it would help, I would tell anybody. OSA is not well known, and the more people that are aware of it the better. If appropriate, I also offer to lend them my oximeter for an overnight checkup.

Quote -I've been thinking about this a lot lately, for a couple of reasons. One is that I was invited to go out to lunch with my former business partner. But my undiagnosed apnea played a big role in why that person is my former, and not current, business partner. Now that I know that I wasn't really in the driver's seat during the years we worked together, but my undiagnosed illness (or is it a "condition?" What do people say?) was -- do I tell her that? End Quote

I would love to have the opportunity to tell my previous partners, colleagues, friends, employers etc, that I had sleep apnea whilst I was with them. Certainly they would understand better why certain things happenned.

Quote - Also: in a related question, do you think of yourself as "sick"? Or having an "illness?" Or do you have a serious medical condition which you are managing? End Quote

I have a serious medical condition which I am treating, and those close to me can tell I am different (more alive).

Quote - It's funny. I will talk to total strangers and every close friend about my diagnosis -- but I get really squirrly with people I don't know that well, or people with whom I have an expectation that I am going to maintain some kind of "professional" demeanour. End Quote

I have never avoided the fact that I drank too much, and stopped. The only way that shame and stigma are reduced is to freely accept it, and talk about it. I was very happy to discover I was an alcoholic, and could do something about it, just as I am very happy to discover that I have Obstructive Sleep Apnea, and can do something about it. I actually thought I had dementia.

Quote Please tell me I'm not the only one who struggles with this. [/end quote]

Well, as you can see, it is not an issue for me to struggle with. It is just another medical or life issue I have to accept and deal with. If it is appropriate in conversation I mention it.

However, if anyone asks me how I am, I ask if they want the long version or the short version. The short version is "my back is not too bad today", (if it was bad I would not be out), and the long version is - well - to tell the truth - no one has ever asked me for the long version.

Hope this helps somewhat

cheers

Mars

[Mtnviewer]

I don't see the need to tell any or many people about "my" situation, but I have commented to others about sleep apnea in general and it's diagnosis and it's effects IF someone comments about symptoms or the topic of sleep. Early on, I felt at the time the need to have told a few close friends of my condition. I don't feel that need any more. IF in your situation where my condition in the past had affected a relationship, I "might" tell them IF it would change or enhance the present relationship and I really trusted that person.

My biggest fear though in telling just anyone, and even some of those that I consider friends, is that the diagnosis may come back to haunt me, in that I could be descriminated against for a job, insurances such as health or vehicle, possibly have my driver's license compromised (and deservedly so if I wasn't benefitting from CPAP and so a risk to others) and perhaps be impeded in other ways that I haven't thought of yet, all because of someone else perhaps misunderstanding my condition, it's effects and MY therapy success. CPAP is enough of a situation to deal with. I don't need others to approve, comment and especially misunderstand or exaggerate only what they hear or think that they know about me and OSA. For me it's better not to be in a situation where I one day wished that I could take back what I said with someone about OSA, so I don't say it in the first place.

P.S. Mars said it all very well and with great compassion.

[jweeks]

My biggest fear though in telling just anyone, and even some of those that I consider friends, is that the diagnosis may come back to haunt me, in that I could be descriminated against for a job, insurances such as health or vehicle, possibly have my driver's license compromised (and deservedly so if I wasn't benefitting from CPAP and so a risk to others) and perhaps be impeded in other ways that I haven't thought of yet, all because of someone else perhaps misunderstanding my condition, it's effects and MY therapy success. CPAP is enough of a situation to deal with. I don't need others to approve, comment and especially misunderstand or exaggerate only what they hear or think that they know about me and OSA. For me it's better not to be in a situation where I one day wished that I could take back what I said with someone about OSA, so I don't say it in the first place.

Hi,

To be honest, that is the best reason there is for telling as many people as possible. If someone is going to dislike me or discriminate against me for treating a serious illness, I want to know as soon as possible so I can avoid them in the future. You wouldn't expect a company to fire someone who breaks a leg or gets cancer, so harassing someone for treating OSA is absurd. I wouldn't want to work for any company that has that type of backward thinking.

I feel sorry for those who are ashamed of themselves for needing a medical treatment and are "in the closet" about CPAP. That goes double for those who are too proud to use CPAP risking their own death and being a menace on the highway.

-john-

[KatieW]

I am very grateful to 2 women friends who casually brought it up at dinner conversation. It was no big deal, they talked briefly, but openly about their sleep apnea, and cpap's. They were upbeat and positive and are doing well with their therapy. Their husbands were supportive and glad that they are looking after their health.

It made me start thinking that maybe I might have sleep apnea, and I asked my doc for a sleep study. I was diagnosed with "severe" sleep apnea, that (fortunately for me) responded very well to cpap in the titration portion of the study.

[raggedykat]

Also: in a related question, do you think of yourself as "sick"? Or having an "illness?" Or do you have a serious medical condition which you are managing?

I have an appointment with a new doctor today and filled out the paperwork sent by his office last night at home. Under medical conditions sleep apnea was listed along with a space to fill in how you are treating it.

[bearded_two]

I mention it whenever I feel it is appropriate, the same as any other medical condition. I find that most people I have mentioned it to have heard of sleep apnea and most have heard and some have even seen a CPAP machine and mask.

[MoneyGal]

Thanks for all the replies. I really appreciate your input.

I don't think it is a "black or white" situation. I've been extremely open with my diagnosis with everyone close to me, with my whole extended family (I sent out mass e-mails and phoned people) and with people in my social circles for whom I thought it would make a difference (I told everybody I train with at karate, for example; although I don't know lots of them well -- but we are involved in something physical and health-related together).

But the reality is that there *is* discrimination. Or, perhaps I should say that disclosing a diagnosis can and does change how people think of you. I originally started thinking about this issue when I was talking to a friend who has Type 1 diabetes. She's experienced some challenges in managing her therapy this year, at a time when she was also finishing her PhD and applying for and getting a post-doctoral position. She wondered whether to tell her new boss that she's been experiencing some health setbacks, because she doesn't want to go into a new work setting giving him a reason to wonder whether he's going to second-guess his decision to hire her.

I have no particular drum to beat on this topic. I haven't disclosed my health status at work (I have a new employer), nor do I plan to -- it isn't relevant to my work situation. (I'm probably healthier than the "average" employee, whatever that means.) My therapy is working very well, and I am 100% compliant.

So, for me, it isn't that I'm "ashamed" of my diagnosis or "in the closet" about my therapy -- I feel it's more like that I'm aware of the potential pitfalls of disclosing this issue to others, and I am somewhat conservative about disclosing in "professional" settings.

[rubymom]

For me, it's not a matter at all of being ashamed. It's just private. There's lots of things about me that I'm not ashamed of but I don't go telling everybody about because they're private.

Yesterday in a staff meeting, my VP announced that she has sleep apnea and is really struggling with the CPAP and making jokes about how horrible it is to sleep with her partner wearing the mask, etc. Another manager jumped into the discussion and said he "had" it as well but a dental appliance has totally cured him. I thought about jumping into the conversation and decided to just keep my mouth shut. I also thought about emailing her privately later to offer help and let her know about this board but again decided to keep my mouth shut. I just don't really like to get into my health issues in the workplace.

Now, on the other hand, my sister is on CPAP and we've discussed this board and the help that is available for her issues. My other sister knows she has OSA but won't go for the sleep study and we've discussed that as well. And a friend told me her husband has it and is doing very well on CPAP. So in all those cases, I've felt comfortable discussing it.

Good luck deciding what's best! In the case of your business partner, depending on how badly I felt about how things turn out, I might want to apologize and explain.

[Georgio]

".....I could be discriminated against for a job, insurances such as health....." This is a real concern and is very commonplace. When a health insurance company pays a few apnea related claims or "losses" they will jack up your rates to where your employer can no longer afford to keep you. It's just good business. I share my "condition" with those closer to me....especially anyone I suspect could be at risk. Because of discrimination, I would advise sharing on a need to know basis.

Georgio

[Autopapdude]

Who do you tell? Let's see---first, It might be nice to tell the person with whom you share a bed that you have OSA Seriously, I do think that family members should be informed, as it is a medical condition, and if anyone ever needs hospitalization, the treatment facility needs to know this. As far as work associates, business partners, and friends, it seems that good judgement should prevail. Who will be supportive of you? Are there any friends who might be judging you for a condition of your health? (if so, are they really friends)?

the caveats of work and medical personnel are obvious. HIPAA laws do protect privacy, but insurance companies love denying claims due to preexisting conditions. Did you disclose everything to your insurance provider? DO you have group or private coverage, etc. Lots to think about. One thing I have noticed is that good friends are supportive, helpful and concerned.

[BlackSpinner]

I tell everyone I know about the wonderful recovery I have made if it fits in the conversation. I tell them how much better I feel now I have good therapy for my health issues, and what a nasty, under diagnosed and misdiagnosed condition it is.

I also thought about emailing her privately later to offer help and let her know about this board but again decided to keep my mouth shut.

And just how are you going to feel if she has a stroke or heart attack due to not using her cpap effectively when you could have helped with a bit of information and support?

Did you disclose everything to your insurance provider? DO you have group or private coverage, etc. Lots to think about.

If you don't disclose it and something happens even if it is totally unrelated US insurance companies will drop you faster then a burning coal plus they will depend payment for everything they have paid for. This is documented by congressional committees, even if you have forgotten to mention a UTI or misstated you weight they will drop you.