I very rarely go out. I'm just in too much pain and too tired from lack of sleep because of pain. The rare times I do go out I seem run into people who say you look good. It's hard to believe you're sick when you're smiling like that. WOW. It makes my blood boil. They do not see the bed sores on my butt, behind my ears and on my scalp that bleed and take forever to heal from rsd. They do not see all the scars on my stomach from all the surgeries I've had do to my immune system going haywire due rsd. They do not see the broken, chipped and missing teeth in my mouth due to rsd. They do not see the clumps of my thinning hair I take off my brush every night due to rsd. They do not see my nails turning yellow and brittle due to rsd. They do not see my bones thinning in my hips to the point I can barely walk due to rsd. They do not see the twisted fingers and crooked non-functional wrist I have due to rsd. They do not see the all the pills I take to help deal with the constant pain and anxiety I suffer due to rsd. They do not see the constant nausea I feel from all the pills I take due to rsd. They do not see me curled up in a ball unable to move because of the electrifying, burning and stabbing pain I feel all over inside and out (until my meds start to kick in) due to rsd. They do not see the times that instead of smiling, I cry my eyes out from the pain of the spread I have due to rsd. They do not see me up half the night in pain due to rsd. They do not see wake up screaming from the nightmares of dying due to rsd. They do not see the rsd that has spread to my limbs and stomach which make it difficult for me to walk, to hold hands, to drive, to eat, to move and to breath. They do not see me in bed for a week, after the rare and short outings I take, because of the increased pain and exhaustion I feel due to rsd. All they see is me for a minute and assume because I look okay and am smiling that I'm okay. They assume because I cover my scars on my body with clothing and because I cover my scars emotionally with a smile that last a second that I'm okay. Well there wrong. I'm not okay. I take over twenty pills a day to barely be able to get out of bed, shower, eat something soft because my teeth are falling out, feed my dog and cat and then go back to bed. That is not being okay. I tell them this, but they just don't get it. My drs get it. My family gets it, but people on the outside looking in for a split second don't get and I doubt they ever will. It's just something I've learned to accept. I hope you can too someday. It's not fair, it's not right, but it's the way it is.
There is a heartwarming letter to family and friends on RSD HOPE that helps one person to explain to them how it feels to live with rsd. You may want to check it out.
I also ordered some pamphlets and a rsd wristband from RSD HOPE so when people question me about rsd, I just hand them a pamphlet. I figure it may not only opens their eyes to what rsd is but it also raises awareness of rsd, so maybe someday there will be a cure.
I wear the rsd wristband all the time so if I happen to get into an accident while my husband drives me somewhere, that the ER will be extra cautious with me because I have rsd. I figure that can't hurt either.