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

That's good, even if a little imprecise. You don't think normies try to do that? Understanding us/how we feel is a little (little?) like trying to describe a sunset to the blind (and I've actually tried that). Do you explain to folks what you want/need/expect, or are they just supposed to know?

I don't ask any of these questions sarcastically. I ask them rhetorically to elicit some dialogue/introspection.

Something I've noticed is that when someone here on NT says/suggests something, it's recieved quite differently than when suggested by a normie, even if essentially the same. Have we become prejudiced/jaded?

I get that, but I also think it comes off as a little arrogant. I don't live under a rock either, and I try to stay current with my situation, but I sure don't know everything, and I don't really care where/from whom some suggestion comes from if it's something I can use or pass along. E.g., I'd never heard of that scrambler therapy before I posted about it the other day, and if it weren't for a normie who knew somebody, I'd have never known about/found my first CP support group many years ago.

Yeah, I went through that phase, and watched as friends & family deserted me like rats from a sinking ship. I learned from that, and things (relationships) are much better now - even if I'm not.

My main point is, normies may not understand and never will, but it's up to us to educate them - as best we can, and as best they can understand - in order to give us the support we need/want. I have some books on disability etiquette; they were written to educate normies how to act/interact with disabled persons without offending. Something like this one:
http://www.unitedspinal.org/pdf/DisabilityEtiquette.pdf

Yet the only thing I've seen for chronic pain is things like this:
http://www.cafepress.com/+pain_warning_posters,95421429

Maybe we need to put some compassionate thought into something better; something to educate normies about supporting us the way we need, if that's possible. [As the Japanese saying goes: Fix the problem (in this case, the "support gap") - not the blame.]

Doc

Pain is an output from the brain when it senses danger. It is like a smoke alarm it doesnt know if the toast is burning or the whole house is on fire. Also, past experiences affect pain output. It is real.
Pain comes from mechanical or chemical irritation, and an overactive nervous system.
Once tissue is healed and pathology is ruled out pain may persist for several reasons. The good news is the brain is plastic and can be retrained not to send out a pain signal. Neuroplasticity.
Neuromatrix of pain explains this well. Google those terms and see if they help your understanding of pain. This is not an easy journey but is winnable. And as much as some dont like it...movement is key. Gentle easy movements within the pain free or easily tolerable range, say 1-2/10.
Be easy with yourself. Knowledge is power and you have the power to change a lot of pain issues once pathology has been ruled out.
Peace\
Bob

Doc, I know exactly what you mean with this- and I think that's the hardest part about my condition. I have always been *the strong one* to whom everyone else has turned when they needed support or answers. Now I am finding that those same people don't have the strength to support me.
I think in general I am surrounded by a lot of these drama queen/kings who are now having trouble when I can't put all of my energy into their needs or wants.

I make it a point NOT to talk about my pain or condition or anything related to it unless I am specifically asked, and even then, I don't go into details (which YES, is why I am here, on this board, with other folks who can relate to my situation.)
But even when I am asked- which lately I hear a lot of "Why don't you open up and try to talk to me/us about what you're feeling or what's going on? We can't help if we don't know"- then these same people that ask end up saying the typical things:

"You should try...(stretching, exercise, a new doctor, etc, etc, etc.)"

"I knew [fill in blank] who had that, and they don't [act, hurt, cry, complain, etc] like you do"

"You'd feel better if you would just [get more sleep, eat better, live healthier]"

"Oh, just take your medicine and relax, and it will all be okay"

"You need to [get your mind off it, suck it up, tough it out]"

(On this my favorite saying is 'If I have to pull up my big girl panties anymore, the elastic will break and I'll really be showing my ***!")

And then my personal favorite response to my talking about pain is when someone (a 'normie') tries to TRUMP my pain with theirs- if I say (and again, as I said, this is only after being asked!) that it feels like there's a lightning bolt shooting down my leg and I can't go to the grocery store right now, they will say something like "Yeah, my knee's been killing me too! I think I need a couple of Advil" and proceed to ignore or blow off what I just said by going into details of their knee pain, then change the subject entirely.

I've learned as everyone's said that when people ask me how I am doing, they don't really want to know, so I just smile and nod, and say something jokingly like "I could complain, but it wouldn't do me any good"

But ya know, the truth is, I'm not even really talking about people not listening, or wanting to hear about my pain and condition. My main complaints about a lack of support are:
About people who know about my condition, pain, limitations, etc, and still need to be reminded from day to day that I cannot jump up and go at a moments notice, or drop everything to do what they want to do, when they want to do it.
about people who have seen me struggling to walk from my chair to the toilet and don't seem to understand that the condition that limits my mobility at home would also make it impossible to go shopping at the mall- and that this frustrates me just as much as it does them.
about The people who work at the store who act as if I'm being lazy by riding the buggy around because I look too young or otherwise healthy to have any mobility limitations.
about the people in the store who get angry because the buggy takes up more room in an aisle than an individual standing up, and that I take longer to
make my selections because I can't move as quickly as normies.


LMAO- You get that too???? At least once or twice a week, my in-laws mention some new cream or cure they heard about, and most involve things I've already tried or are scams. (They are in their 70's are targets for scam artists trying to sell them some new anti-aging or arthritis product!)
I try to take it with a grain of salt, because at least they are trying to show they care, the best way they know how.


I couldn't have said it better myself!

Thanks to ALL who responded to this thread- it shows to me the truth- we ARE all in this together, and we can all relate to these same issues.
Without this board, and my new friends, I'd be a mess!

Out of the 3 friends I had, I'm down to one & she blows me off too. The other 2 ignored my calls and voice mails and emails! I guess they thought if they ignore her, she'll go away! No, they are the one's who went away.

The one, offered to take me grocery shopping NEXT Wednesday!!!!

I'll just starve until then. Did she hear herself? She knows me! Oh yea, she ignores me too some times. It's easy for them not to respond when you call, leave voice mails or emails!

Our pain is invisible to them. They can't see it so they can't feel it.

I too understand and I hope coming here,, you get what you need!
We care about you!

The difference is soon will no longer be here as there is no other option with this never ending pain. Nobody is the judge of another and this pain must end. if I could make your situation better I would. I can no longer take the pain, abuse, denial, shunning and suffering. I pray there is mercy for my soul. There is nothing left to fight for nor the energy to do it.

My heart just breaks for you. I was in a similar position 11 yrs ago. I felt life was not worth enduring in the pain I was in and I was bluntly, a burden to everyone and felt I just made everyone sad. I had written all my letters to try and explain to my husband and family why I chose to end things...I truly believed everyone once they got over their sadness would be better off.

Obviously my plan did not work. My husband was away on a business trip and my plan was to check into a local hotel and then he would not be the one to find me. That week there were several conventions in town and not a hotel room available in a 25 mile radius. I spent hours and hrs calling around and fell asleep exhausted from trying to fulfill my "plan". I awoke the next day, so overwrought that my plan had failed that I took several tranquilizers to calm down and slept for another full day. Long story short, at doc appt the next week my doc sent me to a pain specialist who completely turned things around for me and I am glad I failed at my "plan".

Please talk to those closest to you, tell them what you are going through and ask for help. I did end up telling a good friend who also endures pain. If you don't have a friend to talk to their are help lines or pm me and we can talk.
You are in my prayers. 25 yrs in and still fighting must be beyond horrible.
You have friends here....please talk to us. private msg me anytime at all.
Diandra