Hi, just want to say some things to whomever will listen. Over the past 5 years or so I have had quite a few experiences when it comes to losing the people around me, due to chronic pain. Even though it seems fairly common it makes me wonder why it has to happen. I can say for myself, that having chronic pain has made me clearly see the flaws in other people. For me it's always a friend or a family member seeing me in pain that automatically sets off a red flag to distance themselves or run away. Each time it happens, it hurts more than the last. My original injury was on my left ankle, when I fell down the basement stairs. That was when I was around 15, and I have been in pain ever since. About three months ago, I finally received a diagnosis and the recogniton of having RSD/CRPS. The pain has changed everything, and took a lot away from me. I never had a normal highschool experience, and I have missed a lot of opportunities. I wasn't even able to graduate since I could not to earn the credits for the physical activity portion. Since I have been left out of the loop all these years, I often feel like an outsider within my own age group. Making friends isn't difficult, it's keeping them around when they realize that the pain I experience gets in the way of what they want. If only I could make them see how blind they all are. The things that seem so important now will mean nothing to them in a few years. Although I would never wish any sort of chronic pain upon anyone, I always wonder how the 'critics' I have met would react to feeling this sort of pain, whether that ends up being friends, family or even doctors.

There have been way too many but the most hurtful people that won't accept what I am going through have to be my grandparents, and my best friend...which I have known my whole life. I had been forced into thinking that if I can't even trust those people, there really must be something wrong with me. In addition to bone related pain the burning, stabbing, consuming pain with extreme sensitivity has now spread all the way up my left leg, into my hip and across my lower back. I also have the same pain all through my left hand and arm, down my left shoulder blade and up the left side of my neck. Since getting up and standing at the counter to brush my teeth can be difficult in itself I use a wheelchair when I need to go out. The shame I feel from that is crippling. I am by character very stubborn and independant, add that with the sense that I always need be doing something useful, and my emotions are a riot. I have been through many medical procedures and medications, none which seem to stop the vicious spread. On top of the RSD, I have a few other medical conditions that seem to have worsened, including a full body ache that I can only relate to severe anemia and migraines every few days with headaches pretty much everyday. The only treatment that has proved the slightest bit helpful with the RSD pain is a nerve block with an epidural a few hours later. When my entire lower body was numbed and feeling frozen, the greatest thing about it was that I was able to sleep from 5PM that night until 8AM the next morning. I usually have a very hard time getting to sleep.

Just these past three weeks I have been reaching out to someone from my past, who has recently come back into my life. Since we went our separate ways on good terms I didn't see the harm in being open and honest with him. We were very close and he brought me a lot of happiness. We have been talking online since we are currently in different locations. At first it seemed like he hadn't changed at all, but I was stupid to think that he would be the same guy. Where he was warm and caring and good natured before, he is now a little cold, sometimes insensitive and he has a lot of shadows. I understand that people grow up and change but I wasn't prepared for it to be this drastic. He is convinced that he knows what will help me, and he has no problem being blunt about it. At first I thought I saw what he was trying to do...helping me by being tough, caring but feeling that kindness wouldn't help. Downright cruel sometimes, but with random moments of the old kindness. I am not sure about anything anymore and I could use some advice on what to do, because honestly I have no one else to turn to, despite his confusing attitude. Was it right for him to tell me I am causing my own pain? Am I wrong to continue talking to a guy who can't grasp the effects constant pain has on a person? To a guy who has no idea what chronic pain is or why I act differently sometimes? How do you make a person realize that I don't do this to myself and it's not easy to just get up and 'do' everything that I want to do. I have a fairly positive attitude most days but I am afraid that he has already seen the 'red flag' and will be just end up another disappearance. And I will have ruined the image he had of me before. Am I wrong to assume that he is ending up like the other people what were in my life? Or is it safe to say this influence isn't what my pain needs right now.

Hi Emily ~ I'm sorry to say that he's just another of the ignorant uneducated people that we deal with every day of our lives. It's his loss. Like you, I'm so tired of people telling me what "will help me" ~ as if I've NEVER tried this before, or the doctor as never heard of it before!! Good God, where do they think we live, under a rock??? We read newspapers too, and I'm sure the doctors read medical journal also. It really gets tiresome, and somewhat insulting! I know people are trying to "help" but if they'd stop and think, they might think how stupid it really sounds.

And yes, I've lost many many friends. I've only got one friend from my original group of school friends left. This friend I've known since I was 4 yrs old, so she's a real true friend. The others are online friends who are also chronic pain sufferers, but we've never met. But we're very close, as they understand what I'm going thru, and vice/versa.

I've come to the conclusion that I'll never again have the face-to-face friends anymore, because i can't do what they want to do. And since i don't drink, I wouldn't fit in with them anyway. So what good am I??? LOL. I will NOT go into a bar ~ I'm a recovering alcoholic, so that's not a good place for me. What friend would want to sit in a coffee house all evening? LOL. So, I stay home and watch TV, do crosswords, and sometimes crochet. Fun, huh? But going out is too painful anyway as I have to lay down quite often and you can't do that out in the public. They kind of frown on that and think you're drunk. Then they'd do a blood test on me and find drugs in my system! LOL I'd get arrested for having pain meds in me. LOL. What a fiasco. Just my luck ~ getting pinched for taking my daily meds.

Ya gotta laugh. If we don't laugh a bit, we'll cry. But seriously, I know where you're coming from. I don't think this guy is what you need right now. He doesn't sound supportive at all. You need someone to pep you up, not pull you down. God bless dearheart. Hugs, Lee

Thank you, for making me smile. You have described things exactly as they are. I also liked hearing about you. I probably shouldn't have brought my friend up, but right now he seems to have the most influence on me. It's not always good but it's more than anyone else has done. I don't know where he thinks he is coming from, but it's not supportive. When it comes to dealing with pain a person needs to be surrounded by the right people, and I don't have much choice face-to-face or online. I know that the best thing would probably be to distance myself from him, until I am -hopefully- well enough to act more like he wants me to. I just get really lonely

Hi Emily ~ I know how lonely it does get. But don't settle, Emily. You're better than that. He's making very insensitive comment, which makes me think that he has absolutely NO concept of chronic pain at all, and doesn't seem to want to learn. If he made the incredibily stupid comment that you are causing your OWN PAIN, then he sounds like a lost cause. I cannot believe anyone would make such a crass and insensitive statement to someone they don't know very well anymore. That was cruel.

Yes, it does get lonely, but I think i'd raother be lonely than have to deal with a jerk. LOL. Maybe you can bring him around. Maybe he'll be willing to read up on chronic pain and all it entails ~ who knows? I hope so for your sake.

I'm sure I'm alot older than you, and I'm not willing to start "training" anyone. I'm a widow, and I'm perfectly willing to stay single at this point in my life. So I think I'll just sit back in my rocking chair, put on my shawl, get my crocheting out, and rock and rock to my old heart's content. Trouble is, I have a hard time getting out of that darned rocker. I'll have to install a rope on the wall so i can yank myself out. LOL. Have a great day. Hugs, Lee

Virginia - You did just fine with the reply. To me replies in themselves show that a person took the time to relate, and that's what matters. Even though we seem to have different conditions pain is pain. Same as losing people that should care. It's good to know people who know what it's like, and to be understood. You can post more about yourself if you want to get it out.

Leena - Oddly enough calling him a crass, insensitive, cruel jerk makes me feel so much better. Of course I know he has been, but it's so much better hearing it from someone else. I am sure that I have done everything that I can to make him understand...it's up to him to come around or not. And besides, if I have to force it, then he's probably not meant to understand. It stings a little but that's life.

By the way, for me ages do not really change who I talk with, and I may be really young compared to both of you but hopefully my troubles aren't sounding too immature. Ill listen to anyone with the maturity of being through a lot more than anyone would expect.

Hi Virginia and WELCOME ~ I'm sorry you have the need for this site, but I'm glad you found us! You're right in that chronic pain is a lonely disease. Most of our friends leave us, because we can't do things with them anymore, and our family doesn't understand what it's like. Many times our family even criticizes the fact that we have to take pain medications ~ some families have even demanded that their family member STOP taking their pain meds. How insensitive!!! Just like you said, unless they've lived in our shoes for a day or two, they have no idea what it's like. Chronic pain robs us of not only our mobility, but many times our self-esteem, and adds to it a deep seated depression.

I'm glad you're here, as you'll find some very nice people who will understand. Please keep coming back and venting any time you need. Or just to "talk" too. God bless, and again, welcome. Hugs, Lee

I don't know alot about replying to people. I am new to this site today. I am in pain like you are too. I have lost most of my friends due to pain issues as well. My two grown children have not been a comfort and ignor me for the most part. Unless someone is in pain themselves, they cannot imagin it, therefor cannot sympathise with you. I am sorry you hurt, and please tap back to me too if you care to. Pain is no fun at all, and it is very difficult to live with. ginnie

Hi Emily,

Your experiences/feelings/questions are common among people with chronic conditions. I can't and won't suggest what you should do; I will pass along some things that I have learned on my own journey.

Alienation is one of the most common stigmas experienced by people with chronic health conditions. We patients/sufferers want friends & family members to understand our feelings and the ways chronic pain affects us. They cannot. Not any more than a person blind from birth can understand a sunset, or a person born deaf can understand a symphony. They can get parts - a sense - but not a true appreciation/understanding. At the same time, due to the self-absorbing effects/nature of chronic illness, we painees are often ignorant of the thoughts and feelings of those around us, and the effects our chronic pain has on them.

When I noticed that my friends & family were bailing on me like rats from a burning ship, I asked myself many of the same questions you're asking now. I thought about what all those people had in common that would make them all abandon me like that. The common factor was me. Or rather, how I behaved around them. All I ever talked about anymore was the pain, how it hampered and destroyed my life, how miserable I was, yadda, yadda, yadda...

Talking about our pain and how it affects our day-to-day lives is fine when talking with a doctor or health care professional - or in a support group. That's what we're supposed to tell them - accurately and in detail. But our friends & families aren't doctors or support groups. (If they were, we wouldn't need places like this.) To them we can sound like a broken record. What's more we scare them, and out of fear (and frustration - I believe that they truly do have the best of intentions) they have no idea what to say or do. And as people in fear tend to do, they act/speak reflexively - without thinking. They say stupid and insensitive things like your friend said to you (and like things that have been said to all of us) because deep down inside they're hoping that we are causing our own pain, or that we're exaggerating, or faking, or any of the dozen or so other stupid insensitive things people say, because if they're correct, then that means something can be done about it; that there is hope or a cure. But if they're wrong, and everything we've told them is true, it terrifies them, because one day it could/might happen to them - with no hope or cure - and that is just too terrible for them to contemplate.

I firmly believe in the Japanese adage, "Fix the problem - not the blame". IOW, I don't blame the people around me, and I don't blame myself. I can't fix my pain, but I can do something about my comportment. I had/have to learn to adapt and compensate in many different ways, and the way I conduct myself and communicate with people who can't possibly understand is just another way. In perspective, it's not that big a deal; it's a relatively minor change.

I am not saying that we're supposed to suffer in silence; I'm only saying that tolerance and understanding go both ways.

Now when I'm in a social setting, I'll talk about anything & everything I used to talk about before chronic pain - except my pain and how it affects me. I learned the hard way that when people ask, "How are you?" or "How ya doin'?" it's just a form of greeting - they don't really want to know (I was naïve enough to think that they did, and I told them. Big mistake.) If they specifically ask about my health because they are generally concerned, I keep it brief and on-topic, and let it go at that. Sure, I put on a bit of a front at times, but I've smiled in the face of adversity before. And y'know what? They've stopped bailing, and despite my limitations (which I don't have to go into great detail about with them) I'm socializing more than I did, and everyone is enjoying it more.

Rarely, we do meet individuals - normies - with whom we can share our pain - in depth, at length, or whatever we may need, but these people are very special, few and far between. I am fortunate to have two such friends, and I hope that each of us will have, and that they will inspire others. But in the meantime I do not blame the rest of my friends and family for being human.

I don't know if any of this will apply to your situation or make sense to you. It may not. I hope there's something there that may help.

Doc Smith (IANAMD)
"Oh, the pain... THE PAIN...."

Well Said Dr Smith !

I'm just having a real issue with your screen name because I HATED Dr Smith sooooooo much ! All the trouble he got them into !

Danger, danger Will Robinson !