I have suffered the stygma of my CP, saddly from those I loved, and a doctor I was "required" to see, given at the time my medical case was being handled by Workman's Comp.
Before I was injured I'd been with a man for 3 years. We'd been through good times and bad. In July of '07 we both lost our jobs, and as a result, our apartment. We moved in with my folks on the condition we were just there to get back on our feet and get our own place again. By October '07 I was injured. As time stretched on, my partner's support begin to waiver. This was a man I loved regardless all the things in his past he hid from me. He had massive debt; I worked with him to get it paid off. He had court ordered child support I was unaware of till the day they showed up on our doorstep to take him to jail; I bailed him out. I was always willing to forgive him, to work through the bad times. For better or for worse, they say. Time stretched on, I was still hurting, no one knew why. He was working, I was not; as a result things were going no where.
At this same time I was sent from doctor to doctor, specialist to specialist. No one knew what was wrong with me. I met compassionate doctor's that wracked their knowledge trying to figure out what was wrong and heal me. I also met one who left a lasting impression on me, and also got my workman's comp case dismissed. When asked for perscriptions he didn't want to write them. His final words that were a blow to me emotionally were, "I can't find anything wrong with you, so obviously your fine."
I guess my partner agreed with his sentiment as whenever we fought he flung my pain at me as a weapon. He called me a hypocondriac, said I was faking it, that I was being lazy, that I didn't want to get a job because I liked living with my family. Eventually the relationship ended without notice. He tucked my son into bed, said I love you, good night, and then an hour later packed up his stuff and left. A week later I learned he'd been involved with one of his coworker's, and had been for some time. We'd been engaged for two years. A month after he left me, I finally had a diagnosis (11/10), but it didn't matter; a month later he was married to his new girlfriend.
I tried to put it behind me, chalk it up to more of his lies and his past, that not everyone was like him. And I met a man I felt guinely did care about me and my son. I was wrong. I had explained to him in detail about my condition. What it meant, how it affected me, how I had to fight the pain and use my arm; I couldn't give in and baby it. As time went on though it was clear he didn't understand. I was being a baby, I needed to suck it up. My medication was messing with my emotions so I just needed to stop taking my pain meds, period. I also needed to stop doing anything that caused me pain ... it didn't matter if it was part of my physical therapy or if it made me happy when I created something, all of it just needed to stop. Then the summer heat started and my arm would get swollen and tender to the point where he couldn't touch me. He tried one night, tried to just put his arm over me while I slept, and the pain hurt so bad I woke up screaming in shock and pain "Don't touch me!!" I broke into tears instantly and apologized ... he chose to yell at me instead. I was hurt and felt betrayed, "You can't think I like this, you can't think this is by choice! I didn't want this, I didn't ask for this. I tried to explain all of this to you. This hurts me just as much. Don't you realize there's nothing more that I'd like then to be held, especially since I hurt?!" but it didn't matter. I was told in no uncertain terms, and very coldly that my pain got in the way of his happiness. And before I knew it, that was that.
I get the looks, we all know it, that stare of "are you just lazy?!" or "what's your problem" or "to good to get dirty" or "what am I, your slave?!" when I ask for help. I don't look disabled, I don't look like I'm hurting. No one sees me curled in a ball crying my eyes out, and only my family sees the tears of frustration. No one realizes how much of my life I've lost, how much I've had to modify, but they judge me anyway. When I ask them kindly to stack my hay, and explain why, and even offer to tip, they still give me dirty looks like I'm just being lazy, or some barn brat. It hurts, it hurts as much as the physical pain.
How do I cope with it? I just acknowledge that it is what it is. People are selfish and narrow minded, and as even one person has admitted here most people have no clue as to what people with CP go through until it affects them, or it affects someone close that they love. They see us as big babies, that the pains no big deal, that don't we take our medicine and it just goes away? I've not lost a limb, nor am I in a wheel chair, or grossly deformed, so how can it be that bad? It's just pain after all.
I wish there was a way to let people walk in my shoes, to spend a day with my pain, and then honestly see just how much of a big baby, a lazy slacker, a fake, a whiner, or a phoney I really am.
Thank you, Dani, for once again being willing to bring up a "sore" subject for all of us in hope that we'll all be able to deal with it a bit easier. *hug* You really are an amazing woman, and I feel lucky to know you.
Originally injured 10/26/2007 - Initial diagnosis; Tendonitis
Spent next year seeing specialist after specialist; Bone, Muscle, Hand, Neurologist, Chriopractor, Physical Therapist...
Went through a battery of tests, multiple MRI's
11/16/09 I was finally diagnosed CRPS - Stage 2
Permanently disabled, on Percoset.
February 2011 successful SCSU trial
No surgeon willing to do my SCSU Implant