The word "shaming" seems to be popping up a lot these days. You see it in reference to body size (fat-shaming), the ridiculous and harmful criticism of women and their sexuality (slut-shaming) and the list goes on. I've even seen it used in conjunction with oversharing on Facebook and Instagram (online shaming). Like other popular sayings, it will go away, but it will do it's damage before it's course has been run.
As annoying as the catchphrase may be, I started to realize that "shaming" happens to us, to people with disabilities, and it happens a lot. We are shamed by doctors who talk down to us and leave us feeling silly, who don't understand that we know a lot more about this disease than they give us credit for. We are shamed by our friends and family members when they don't understand why we can't do the things we used to do, be the people we used to be. We are shamed by strangers for things like using the handicapped parking spot we are entitled to use, for using assistive devices and for struggling to say the words that we are trying to get out in the right order, trying to make what is in our heads sound sensible and cohesive.
"Shaming" leads us to isolation. We eventually stop trying to make the able-bodied world understand ,we stop trying to explain our symptoms and fears to our doctors, we make excuses for not seeing our friends, going to parties or continuing our careers. It's easier to be silent than it is to explain that attending that barbecue will have us flat on our backs for the next two days.
We have all had so many of the same experiences friends telling us that if we just follow the diet they read about, try juicing or stop drinking soda, exercise or pray more, we will be magically cured. The advice we get may be given out of love and caring, but what we hear is that we are to blame for having multiple sclerosis and it is shaming at it's worst. Just because it comes from someone concerned about us doesn't make it right, in fact, it hurts the hardest.
I have yet to come up with the perfect comeback for these situations, for the "shaming" I have felt. I wish I could come up with something that would explain that while I still want to be your friend, I don't want you to make me feel shame for being ill, ever again. Maybe some of you have figured out how to get that message across because I haven't, and I could sure use some help with this one.
How many specialists did you see before finding "The One"?