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...."