WOW.

Ok, so I've spent a lot of time hear complaining about the pain, and the doctors, and asking about my meds. Today I have a new complaint. Well, not just today, but everyday- it's just that today I've kinda had it up to my ears with it.

Does anyone else here feel like they have no support from family, friends or loved ones? Or like they just don't understand?
Most days I feel no support or compassion for the pain I am in, or the frustration I feel. Seems that most around me are just getting tired of hearing me b$%#ing, or maybe it's that I'm reflecting based on how I might feel in their shoes- IDk-
When I try to talk about how I am feeling, physically or emotionally, I get the reactions of either someone trying to 'trump' what I feel with what they feel, or a simple 'Yeah, but, it'll be ok' blowing off. I feel guilty for expecting compassion, and guilty for even posting about it here- like I should just 'get over it'. But then I know that is not right, and that I shouldn't have to.
Everyone deserves a pity party once in a while, and this is mine!

I do understand what your saying. I feel this way now and again. I'm great at pretending I'm not in pain so of course to all those around me have know idea what my pain is like. I often say that someone was to walk just a few steps in pain they would want to jump out! I'm here and do understand!!

I have stopped talking about my pain unless someone notices my stide is off, more limping etc. I have also been asking the CRNA about doing some trigger point injections or my nerve blocks. He is just not comfortable with "shooting" me it seems. My spouse seems to think if I would just "do more" makes me want to screem at him. The other night he was having muscle spasams in his back and was fussing about it. Told him welcome to my world take your meds and go do something. He slept on the couch that night! He was very suportive with my intial injury (in 1998) but does not recall or care about things that make my pain worse.

Hi 72daywmn,

What kind of support or compassion are you expecting from these folks?

I think your reflection is spot-on. I've seen it with others, and I've been there myself.

How do you want them to respond? How do you think they should respond? IOW, again, what are you expecting from them?

The facts are that most normies don't know how to take us (how they should act/respond) - we scare them, and they react out of that fear.

I've been involved in pain support groups almost as long as I've been in pain. I've met people - "drama kings/queens" - who are so wrapped up in their pain that that's all they ever talk about (in-group or out), and if they can't monopolize the conversation - every conversation - and be the constant center of attention, then others "aren't being supportive." I've met others who came to meeting after meeting for over a year and never spoke about their pain once (like internet lurkers) - though a few of them never shut up anyway.... and everything in-between. That's all ok, because part of - part of - the function of support groups is to provide a place and people who do/will understand, who we can vent to when we need to.

Outside of support groups all bets are off. Normies, with as much love, compassion, and understanding as they possess, just aren't equipped to deal with us. And they know it. Sometimes we forget.

After I realized I'd driven away my nth friend, I took some time to analyze what happened. I realized that when people (normies) ask me how I am, they don't really want to know (Yes, I was dumb enough to tell them - in great detail). I don't do that anymore. I used to talk about my pain, feelings, & frustration openly, and watch those same looks. I've become more selective about what I talk about and to whom in social settings. There are some I can talk to about these things, and some that I can't, but that's not their failing; I can't expect everyone to be the same or understand. I'm careful not to bring up the subjects of pain & health, and I talk about other things instead. If others ask, I'll start cautiously and gage their reactions, and back off when I sense discomfort. I don't need to talk about it as much anymore, and when I do, I have certain people & places (like here) I've developed relationships with for that particular purpose.

The result is that I'm easier to be around and having more fun. People aren't afraid to be around me anymore. I'm getting invitations again. I can't always accept them, but folks aren't concerned that I'll be a wet blanket. If I have to leave, I excuse myself with a smile (or grimace), and they understand.

Everyone's needs and expectations are different, so my experience won't necessarily apply to anyone else, but it's working for me.

Further reading:
http://www.chronicpain.org/articles/tsocp.html
http://www.medpagetoday.com/Blogs/21266?

Doc

"My spouse seems to think if I would just "do more" makes me want to screem at him"

Pooh.....is your spouse my first physiatrist ? Or my husband ? Sounds just like their words of wisdom....lol

72,

About 6 months ago, my 16 yo son said "Yeah, it's been going on for 6 years already.....get over it"

It felt like he punched me in the chest.

That night was a big ol' pity party !

This past Tuesday morning, my 15 yo son spent a half and hour SCREAMING in my ear because he WANTED to make my pain worse (severe headache d/t occipital neuralgia) because I woke his brother up for a shower before him. After the pain finally subsided, I had a good ol' cry for myself because I raised such a monster. By that evening, he apologized and we had a long talk in the hot tub.....not about my pain and the impact that has on him, but about my sil with stage 4 breast CA with brain mets and how he feels so bad for his cousins who are younger and don't know the seriousness of her condition.

Just like we can be overly irritable because of the stress of chronic pain, our loved ones can also find inappropriate ways to vent their frustration. I get that now, when my pain is managable, but when it's soaring then I'm back to the "my kids are heartless monsters and I've failed as a mother" pity party.

I think it's normal and natural to have some days like that....when we mourn our old "healthy" lives or get angry about being ignored by doctors or feel unsupported by family and friends. When you get stuck in that rut for too long, I do think it's important to seek psyciatric help. A few moments of frustration when you are dealing with insensitive schmucks is just a vent......and that's allowed !

So....Who, in particular, was being a schmuck to you ?

I've had 26 years of this chronic pain, and believe me, we don't get support. It's just as simple as that. Our families think that we should do more because we'd "feel better." Or they think we should see "new doctors" because maybe we haven't had "enough done" yet. Or maybe buying a new outfit would make us feel better.

I've heard it all. I just refuse to listen anymore. I don't get support -- All I get are most suggestions about things that I've ALREADY DONE!!! I guess I'll have to write down every procedure I've had done and put it on the fridge. Maybe they'll leave me alone. I'll have to mail it to every friend/acquaintance too. People are always sending me newspaper articles about some "miracle cure."

The only support I get is from my BRA. Hugs, Lee

I would consider those things supportive, i.e encouraging. It's not that they think we haven't done enough; it's their attempt at imparting hope.

Normies have no idea what to do or say, but I believe they try to do their best, and that's a lot better than ignoring us or figuratively stepping over us as we lie in the gutter.

What's your definition of "support"?

Doc

I too, try not to "reveal" if I'm in pain....especially at work. Even though they're nurses, most just don't get it. I've cut my hours down to weekends to lessen the stress on me. The only way someone figures it out is if I limp more or move stiffly. My kids are grown and doing their own thing so it's just my husband and I. I used to be really **** about my house cleaning but just don't let a messey house consume me. My husband of 6 years, God love him, has seen me in pain and discomfort most of our marriage. Although I feel guilty sometimes, he never nags or rags on me, and does help with the housework. I'm lucky to have him.

So, if you're not getting the support you need, come here and share with us. We'll "listen" to you. God knows we've all been there at some point.

Rhonda

My definition of support is just try to be understanding. Realize that I cannot do the things I used to do ~ and PLEASE do not offer suggestions as to treatments as I've had them ALL done. if YOU have heard of them, so have I ~ I don't live under a rock.

I think MOST of us just want understanding with MAYBE a little compassion thrown in ~ NOT pity. I HATE pity.

And unless you REALLY want to know how we are, don't ask. LOL You might get a long drawn-out diatribe of every painful spot on our body! lol

Have a great day. Hugs, Lee