Oh NiNi, I know just how you feel!
I was with a man for over three years when I got injured. He was with me infact the day it happened. He went with me to many of my appointments, watched me struggle with doctor's disbelieving my pain when they could physically find nothing wrong on my tests, watched me struggle at physical therapy, the tears in my eyes constantly from trying to fight through the pain, the withdrawls of quitting Vicoden cold turkey. But after my case was closed, after I was told "I can't find anything wrong with you, there for you're fine." everything changed. This was now a year and a half later. Now suddenly the pain was in my head. I was faking it. I was a liar, a hypochondriac. We were living with my family as we'd lost our apartment, and we'd been on the road to getting our lives back together so we could get our own place again... only now, I couldn't work. I was being lazy according to him, I was content to just stay with my family, everything bad happening was my fault.
After he got in an accident (not his fault thankfully) in my truck, and was set to get a fat settlement, he left. Not wanting to share a dime, other then what I was due for the "value" of my SUV, he bailed out of me and my son's life.... Two months later he was married to one of his co-workers. A job he wouldn't have gotten if I hadn't encouraged him to apply. Ironicly a month after he left me I finally found a doctor who figured out what I had, and recieved my diagnosis of CRPS; just two years after the initial injury on the job.
I would pick up the pieces of my life and go on. Friends and family encouraged me to go out with this man; said we were a good match. It appeared we were. My disability didn't seem to bother him, our boys all got along; life was going the right way. Then we got married, and the truth came out. There were alot of things that suddenly came to light, one of them was that my pain got in the way of his happiness; and yes, he said that to my face. He wanted me to give up /everything/ that made me happy -- knitting, beading, leather work, being a magician's assistant ... about the only thing he didn't tell me to give up was riding my horse. But everything I did caused me pain (well, duh, I had explained this to him! I also explained I had to fight my pain or risk losing my arm!!) and when I hurt it made him misserable. I understand men like to be able to "fix" things, and with CP you can't fix it by conventional methods. You can be there, you can comfort, you can be a shoulder an emotional rock, all sors of thing, but they can't take it away and make you all better. Granted there are days when I wish I had a magic wand so I could make all the pain stop for everyone here, but that's just not possible. One night, in the heat of summer, I was so swollen and sore, like most people who suffer with CRPS I was so sensative that I couldn't bear being touched. Not realizing this in my sleep he just draped his arm over my side and over my arm. I woke screaming in pain, curling my arm defensively against my chest and saying, "Don't touch me!!!" He was furious. I broke into tears, apologizing, but the damage was done; he rolled away from me, wouldn't even look at me. I cried and sobbed, apologizing again and again saying maybe we could try a different pose, but he was adamant I just needed to give up all my hobbies and projects, that this was my problem, my fault, and there for I had to fix it; my pain was getting in the way of his happiness.
I still hear that phrase in my head at times. I remember I had suggested we switch sides of the bed so that I could possibly spoon behind him instead, but for some reason he couldn't sleep on that side. So he inisisted I spoon with him anyway, but that put my bad arm beneath me, and before long I had to roll over to ease the pain. I would even whisper in his ear that I needed to roll over, so he didn't get offended. Turns out it was a no win situation. It didn't seem to matter what i did, he'd end up mad at me. Eventually all the stuff built up and he decided that we needed to seperate; the day he moved out he went and got divorce papers.
I have been leary to let anyone into my life since then. I am lucky my family understands. It's taken my father some work to grasp what I deal with, and even my Mother who has watched me since the begining sometimes has trouble understandin. I think reading the article in Time magazine really helped them understand better, as well as some of the stuff I've shared with them in the last year. I realize fully a sympathetic support staff is so important to our mental and emotional well being, and that that can greatly influence our pain as well.
If your family does not understand there are several people on here that can direct you to some great links that help family and friends understand what we're doing with on a daily basis. Personally I'm partial to "The Spoon Theory".
Best of luck to you, and a low pain day as well.
Originally injured 10/26/2007 - Initial diagnosis; Tendonitis
Have seen several specialists; Bone, Muscle, Hand, Neurologist, Chriopractor, Physical Therapist...
Went through a battery of tests, multiple MRI's
11/16/09 finally diagnosed CRPS - Stage 2
Permanently disabled, on Oxycodone and Celexa.
February 2011 successful SCSU trial
May 2011 SCSU implant surgery