Not feeling supported by my friends and family

[Rob1]

Hey everyone. Relatively new to the forum, but I did want to get this off my chest. Ever since I shared how my sleeping habits impact me throughout the day (more stress, no energy, lethargic, sometimes even feel dumb and dull), I feel as though they are making fun of me instead of supporting me.

While it is great to have posted on different forums and talk to people who understand exactly what it is I am going through, I do wonder whether it is too much to ask that people respect how you feel and listen to your problems. It bothers me that I am having issues with something that could (potentially, let’s not get ahead of ourselves) be life threatening, but they turn it into a joke instead.

Is this something that I should talk to my family about? Do you think that it would even make a difference? I just want to know what I can do or what I should say (if anything)

[Nozzelnut]

Using APAP therapy is for your benefit; maybe your sleeping partner too. (if you snore.) People makes jokes about things they don't understand. Depending on who you're dealing with it makes a difference in how you respond to them.

In a perfect world you'd be able to explain how the machine keeps your airway open so it doesn't put undo stress on your vital organs leading to heart problems, kidney problems, diabetes..... They'd say something to the effect of "Wow I didn't know it was that serious..."

But; some folks actually want to make fun of you. If that happens, you can either walk away or take it away from them. By taking it away from them, I mean to poke fun at yourself. Darth vader, fighter pilot, fart filter, whatever else you can say to let them know you've heard it all and it doesn't bother you. You don't need their approval to make yourself feel better.

If they're not with you; they're against you. Life's too short for me to keep those kinds of people in my life.

[BlackSpinner]

If you want to keep these people as "friends" you will have to accept the fact they are part of the "Crazy makers" in your life (Julia Cameron in "The Artist Way" about people in your life). Brush off their ignorance and use them where you need them and understand the effect that they can have on you if you let them.
It is really amazing how health issues will let you see the real person, the one hidden behind the masks of socialization. It is up to you to chose what part they will continue to have in your life. And remember, just because you are related to someone, it doesn't mean you have to either like them or tolerate them.

If you want to find real compassionate people to be friends with start volunteering with organizations who help people with chronic issues.

[The Latinist]

Sleep apnea is one of those things, like depression and anxiety, that people simply can't understand without having experienced them. While it would be nice if all our friends and family members could empathize with us, some things are so outside their experience that it is very difficult. Add to that the fact that sleep apnea is only in the last couple of decades becoming an issue with any position in the general consciousness and you have a situation in which people simply do not understand. Sadly, a common response to lack of understanding is to hide it behind humor or bravado.

My advice is to try to educate those who you can, those who are really important to you; then find a support group of others (such as those on this board) who can support you from a place of experience and understanding.

[LSAT]

Personally, my health is only relivant to myself and my family. I do not discuss things like my sleep apnea with others. If sleep would become part of a discussion, I would recommend that the person see his/her doctor.

[Julie]

One thing I might leave out of those conversations is literal use of terms like "life threatening" as, if the people you're talking to have heard of OSA in the past, it's very possible what they heard about was fat older men who snore, not a very 'sexy' picture to say the least, and not one that conveys 'life threatening' so much as almost humor... so it could be asking for trouble by equating the picture in their heads with a dire threat... if you know what I mean.

Give them a chance to 'get it' rather than getting too 'heavy' about it yourself. I understand that it maybe scary to you right now, but you'll get over that too and as there actually are so many of us who've made it through decades of life without having been diagnosed til we were older, and we did make it, not drop dead out of nowhere (except in cases where it has happened... it does, but not that often), just think of yourself as having joined an interesting, if not always pleasant, new club, and maybe don't tell too many people too many details all up front... let it just kind of seep into your (and their) new reality over time.

[Todzo]

people tend to be scared of sleep apnea so they joke to feel better

[archangle]

Walk up to them, put your hand over your nose and mouth and ask them "Is it funny now?"

I'm at least half joking, but not entirely.

[70sSanO]

Actually it is not too much to ask, but because some people tend to enjoy knocking people down these things happen.

I don't know your personality so what I may do may not be what you would do. You could talk to them and ask them to stop joking about you, this is a two-edged sword because they may just joke more. Or you could go on the offensive a little, which is probably closer to what I would do.

For family I would probably reply that there are studies that show obstructive sleep apnea can be hereditary. It becomes less of a joke if they may end up on the receiving end one day. If the family is by-marriage it won't work.

For so-called friends, I would take any opportunity to offer to let them use your machine when one of them complains that they are so tired... "You never know..."

The truth is, everybody has something. Very few people skate through life with zero medical issues at all.

John

[Pesser]

Hey everyone. Relatively new to the forum, but I did want to get this off my chest. Ever since I shared how my sleeping habits impact me throughout the day (more stress, no energy, lethargic, sometimes even feel dumb and dull), I feel as though they are making fun of me instead of supporting me.

While it is great to have posted on different forums and talk to people who understand exactly what it is I am going through, I do wonder whether it is too much to ask that people respect how you feel and listen to your problems. It bothers me that I am having issues with something that could (potentially, let’s not get ahead of ourselves) be life threatening, but they turn it into a joke instead.

Is this something that I should talk to my family about? Do you think that it would even make a difference? I just want to know what I can do or what I should say (if anything)

This is a skill testing problem. Watch this: You are in 112BC in Rome. I work for the Roman senate. I tell that I will kill you but not now. I will do so slowly and it will take 8 years. I then give you a skill testing question. If you can guess how I’m going to do it…I will set you free. You think about the sulfur mines in Scilly. That won’t work because you die in four at that work. Poison doesn’t work because you die within a year. Since the Romans did not believe in torture unless it was a public display, you arrive at no answer. Now picture this torture today and the answer is “I’m taking you APAP away”.

[Todzo]

Hey everyone. Relatively new to the forum, but I did want to get this off my chest. Ever since I shared how my sleeping habits impact me throughout the day (more stress, no energy, lethargic, sometimes even feel dumb and dull), I feel as though they are making fun of me instead of supporting me.

While it is great to have posted on different forums and talk to people who understand exactly what it is I am going through, I do wonder whether it is too much to ask that people respect how you feel and listen to your problems. It bothers me that I am having issues with something that could (potentially, let’s not get ahead of ourselves) be life threatening, but they turn it into a joke instead.

Is this something that I should talk to my family about? Do you think that it would even make a difference? I just want to know what I can do or what I should say (if anything)

I think that you for your own understanding need to know what sleep apnea does to you.

Google Scholar - PubMed - Other good search engine look for:

Sleep Apnea Executive Dysfunction

Sleep Apnea Brain Damage

Sleep Apnea Quality of Life

Sleep apnea in general is one of those things people would rather not know about.

With family - well - one little fact or concept at a time with lots of time in between. Eventually you get there but do not force or have expectations.

Build family support around things you mutually love and appreciate.

[Sheriff Buford]

I am of the opinion that most of my family and friends really don't want to hear about it. Like "The Latinist" said, I don't think they understand. Conquer therapy for yourself. My wife will start rolling her eyes when I go on a apnea-binge start talking "apnea-shop". Accept the fact that most folks don't want to hear about your aches and pains.

Sheriff

[Guest]

I talk about sleep apnea with anyone who has an interest. Many people have heard of it but have little to no understanding. Some family, some friends, and some doctors.

[MagsterMile]

I think the Sheriff is right. No one wants to hear about your Apnea. My family knows I have it and use a vpap machine. Not once have I been asked how I'm doing. (It's almost 2 years now). If I had heart disease, diabetes or cancer, they would probably show an interest in how I'm feeling. Heck, one of my neighbors uses a cpap machine and even he doesn't want to talk about it. So, I'm grateful for this forum where we can talk about it and get the support we need.

[dadbar1]

I've been using a cpap since 2001.

The best thing you can do is keep it to yourself around family and friends. I occasionally have to go into details when I am traveling with a work colleague and have to dig it out during a security check. I just tell my coworkers that it is a respirator. No one wants to know about your health problems.

After the night is over I put the tubing and mask in a drawer so if someone comes over and walks into the bedroom, it doesn't cause stupid questions or comments.