I really appreciate this article, and I appreciate how you validate your/our feelings of pain and loneliness. I have tried to write about it on my blog, but it comes out sounding a lot angrier! :D I think working through a 12 Step program, like another commenter said, is a valuable tool for people with chronic illness. I do Codependents Anonymous, which helps me face my issues with relationships. I read something the other day that said that going through recovery is basically a system for learning how to be healthy in how we deal with grief. There is a lot of grief involved when we first get sick, and then it changes to a different kind of grieving later on. You don't have to be a raging alcoholic to benefit from the 12 Steps. You can substitute "chocolate" or "yelling at my kids" or "shopping too much" or any not so healthy coping method, in place of "alcohol" in any of their literature. There is a lot of stigma about addiction, so I just want to put that out there... this stuff really has brought me a lot of peace in so many areas of my life. I agree with the other poster that learning to accept ourselves and our situation is a key to feeling better. Not only are our friends in denial, but sometimes we are too. Beyond that, it is important to learn better communication skills, and find new ways to reach out socially. One thing I identified recently is that it isn't always other people... I am often too tired to have visitors, and no matter how upset and angry that makes me, it isn't anyone else's fault. It was a big step for me, because in the past I blamed others too much.
That said, I don't know if I will ever get over the fact that nobody has ever sent me a "Get Well" card or gift. Not. Once. In almost 7 years! I usually post on Facebook when I'm having a flare up. It isn't like people don't know I'm going through a rough patch. I'm kind of a vocal person when it comes to pain! I'm trying to get over it, but that is a tough one.
On the bright side, as the years pass, and as some friends go through their own health issues, I feel honored when they turn to me when they realize how difficult chronic pain is, or how tough it is to navigate the medical system, etc. As we get older and they are realizing their bodies aren't invincible, their compassion seems to grow. It seems like they gain a whole new respect for me. There's still room for hope. Thanks again for your article.