MCTD Support Group
Mixed connective tissue disease (MCTD) or Sharp's syndrome is a human autoimmune disease in which the immune system attacks the body. MCTD combines features of polymyositis, systemic lupus erythematosus, and systemic scleroderma and is thus considered an overlap syndrome. MCTD commonly causes joint pain/swelling, Raynaud phenomenon, muscle inflammation, and scarring of...
Have any of you had friends that seemed to want to blame you for your disease? I have a friend who has a really good heart, but it seems she is always searching for things I might have done to cause this. I had to ask myself why someone with a good heart would want to blame me. One thought I had was that maybe she is struggling with accepting that I am powerless over this disease. Maybe if she thinks I am doing something to cause it that I can change and fix it. She has told me she is going through phases of grief. Have you guys experienced anything like this. I would love to hear your insight!
As scary as it is for me, I know its scarier for him because he feels so helpless.
T
-Kate
...because they are either dead and buried in my backyard, or I am keeping them bound and gagged in the garage until they display a more constructive attitude!
Seriously? You guys have it totally right. The idea that we can fix everything is very much a Western concept, and it is not very helpful. We believe anything is possible, that our knowledge is limitless, that things would get better if we just had the right attitude. The effect, oddly, is most pronounced with mental illnesses where there's a larger component that is psychological. In Crazy Like Us, there's a great chapter that documents why schizophrenics do better in places like Zanzibar, which have a totally different belief system where people aren't shamed into thinking that if they just bucked up and tried harder, did more research, etc. they wouldn't be so ill. The relapse rate is roughly half what it is in the US. (I feel like I just posted about this a few days ago... brain fog?)
It has taken me decades to educate my friends and family, and I still have to remind people constantly. Part of the reason I've gotten so good at playing hurt, and I can work as much as I can, is because my old friends are more understanding, and my new friends are psychotherapists!
Mary Ann
and klwfroggy, I also am always looking for things I did that bring on a flare or cause pain.
My sister told me that if I was more disciplined in my diet (I already follow an anti-inflammation diet / raw food diet) that I could fix this on my own without taking biologics. These people mean well; they just want us better. We're mentally programmed to think we can change something if we try hard enough.