Helping family underestand

[BleepingBeauty]

We all live seperately, and rarely have a reunion. All our communication is over the phone.

If that's the case, then it seems to me you can control the tone of the conversation. If you're speaking with someone that you know is not supportive, don't talk about your apnea or your fatigue. They'll only hear you complaining (again), roll their eyes, and either tune you out or give you their advice re: what you should be doing to feel better. Just say, "I'm fine, thanks. How are you?" or, "I don't feel great today, but otherwise, life is grand. How's everything with you?" Focus the conversation on them, instead.

This journey is a lot harder for some of us than for others, and most "outsiders" just don't get it. *shrug*

[kteague]

Most who make suggestions are trying to be helpful. Most of us hear of a problem and feel the need to try to problem solve. Some on here have read my posts about a dear friend I lost recently who knew quite well how to get me to back off. When she was in hospice she asked us to take her outside for a cigarette. I tried to talk her out of it, and she just looked me in the eye and told me that the things we don't share I can't understand. Well, at that point, she was going outside for a cigarette no matter what the nurse or anyone said - I was gonna see to it. I didn't have to understand - or agree. I just had to respect her. I mean, what was it gonna do, kill her?

Unless someone has walked in your shoes, they can't REALLY understand. Give them grace when it's not worth the battle. If it does become important enough to address directly, maybe say something like, "You know, I can't expect you to understand, but sometimes I feel you don't respect that I am living this experience or trust my insights and instincts about how to best live it." That could open the door to some real dialogue, though awkward at first. If your family relationships are ones you value, you should be free to speak up for yourself, and they should be free to call things how they see them, yet be open to your correction if they are wrong. Communication. No need to write them off. But don't expect too much. We're all human.

I think that was one of the harder parts about this whole sleep disorders ordeal, being misunderstood. I had enough negative self-talk going on and was very sensitive when I knew that others had opinions of me I was helpless to change. It hurt. A lot. I consciously worked hard on releasing myself from anyone's expectations. May have gone too far the other way though. Sometimes I do need challenged.

[secret agent girl]

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[Judy R]

Boy Oh! Boy!! Can I relate! It's taken nearly 3 years for some of my Family members to understand what it is that I'm dealing with. Some of them picked up on it right from the start, while others were slow to figure it out. Yes, I've had to deal with well, why aren't you better, or so and so got over this in just a few months, etc. etc. etc. I have to agree, keep pushing the information at them and one or two things will happen, they will either catch on or they will just give up. But, don't let this run your life, just do your therapy and go on with your day to day life, and the rest will work itself out. Hang in there, we're all here to help each other.

[BlackSpinner]

The bottom line for all this is -

We are responsible for our own re-actions and they are responsible for their re-actions.

You can only be the change for your self, you can't do it for them.

In other words they are responsible for their own stupidity and ignorance and you are responsible for your re-actions (emotions) to that ignorance. You can't fix your emotions by attacking their ignorance because you can lead a stupid horse to water but you can't make it drink. You have to deal with the internal buttons they are pushing - that is the only thing under your control.

[Spirit]

Thanks to each individual reply & support. Lots of positive tips. Thanks for understanding.

[frazzled-snoozer]

If I'm repeating things others have already said.... well I didn't get a chance to read all the posts before I just had to jump in and.... it's probably good enough to repeat anyway, right?

There are many times this sort of thing has come up in my life. Let's face it... we don't always understand what someone else is going through. Most notably I've had this happen when my children were dx'd with autism, when I developed a condition called labyrinthitis and now with sleep apnea. The first reaction you get from everyone is "Are you sure that's what you/they have?" or a variation like "I think that's some made up disease that everyone's just getting labeled with." That whole saga is to be followed by curiosity about the condition where you are their personal walking encyclopedia on the subject. And then it morphs into when they're telling you all the things they've read and ways you can fix it.... the advice stage. But never fear.... we all do it to each other! It's just human nature.

I call the first stage denial and it's because we don't want anything to be wrong with someone we love or there is real scepticism about a given condition. The second stage is all about trying to accept and understand. And the third is all about showing concern and being helpful.

My reactions now are focused on those motivations that are causing the annoying or hurtful remarks. The denial and understanding stages are all about my educating them. This is sometimes even better than them going off and researching on their own because I can explain it in very real and practical terms. The last stage of advice giving I handle by accepting the advice as graciously as possible... remembering they're just trying to be a part of the solution.

Now... if they remain in the denial phase too long it can get old really fast. So when that's the case I just avoid the subject with them as much as possible unless I have new information that might help them along.

[palerider]

calling it 'therapy' tends to foster the misconception that a xpap is going to make things better. it's a treatment, not a cure.

if someone asks you why you're not better, ask 'em why their eyes aren't cured after having worn glasses for however long... just like glasses aren't therapy, cpap isn't therapy, it's a coping mechanism, just like glasses are a coping mechanism.

if they still don't get it, give up, they never will *grin*

[Julie]

And some people just are too lazy to learn, would rather deal on a simplistic level where they only have to approve or not. It is sad, but that's the way it is sometimes.