I guess it's probably a good thing we don't live like The Scarlet Letter... What's that Lady Gaga song? Born this Way? Have you seen the episode of Glee where they are all sporting tee-shirts stating personal things about each character? I swear tho, sometimes I need a damn shirt.
I don't think that people are just THAT self absorbed that they forget that I have new quirks. I think if you can't see it, it's not there. Like playing peek-a-boo with a baby. If they can't see you, then you aren't there. I'd love it if diseases worked like that too. I'll find the fountain of youth and plant a tree that grows money while I'm at it. Do I really need to advertise my private life on a shirt tho to help the population of the world stop behaving like clueless idiots? I simply cannot give in to 'it is what it is'. That's a load of crap. I seem to recall my parents teaching me these things called manners. Perhaps it's time that we revisited those and had a little lesson.
Lesson one: Your 'funny' comments really aren't that funny. If someone tells you that they have MS (or anything else) avoid telling them that you're surprised because they look so normal. Really? I cannot believe I have to spell that out. MS does not come with a rash, a forehead stamp, no limbs will fall off, no visible cooties, nothing. Some people use a cane, or are in a wheelchair. For those that use those try to avoid saying they don't need it or can use the cane as a sword, or the chair as a battering ram... It really isn't funny. I would stay away from any kind of 'you get the sweet parking spot' comments too. Just tacky.
Lesson two: Accommodations are necessary, and protected by ADA. So when an employer says to shake off the sleep with some more coffee, or don't think you really need that handicap stall in the restroom, they're 100% wrong. If you are a co-worker of someone with a disability and they have shortened hours, less responsibilities, and more pay, keep in mind that you can climb stairs, go outside, you can see, you can feel your limbs, you can stay awake all day, you don't have elimination issues, you are healthy. Money can't buy that.
Lesson three: if you're a friend, family or a spouse, or other supporter, remember how important you are! I have bad days too. I'm human. And I know that my friends, family, and husband have days that are less than delightful. Stress seems to be a common trigger for MS symptoms. Families and friends are safe to vent to, or blow up around. It might be wise to ask first. We all handle stress differently. For me, I want to be there, I want to help, I want to hear, I want to help heal, but the stress of other people's problems sends me into a tailspin. I'm not a counselor any longer so please don't expect me to provide free therapy. It's STRESSFUL!
Lesson four: No, you really don't know exactly how I feel so stop saying that you do. Need I go any farther?
Lesson five: I don't need a wheelchair, I can walk just fine. If I needed one I would have one.
Lesson six: I will not use MS so that I can skip to the front of lines, so please don't ask me to 1. share my disease with strangers, and 2. lie about my symptoms.
Lesson seven: My symptoms might not sound bad to you, but they are hell for me. So unless you live in my skin, don't patronize me. It's rude.
Lesson eight: If you don't want to know the real answer then don't ask me how I am doing.
Lesson nine: MS for me is like psychological torture, please refrain from making comments like "At least it's not a death sentence."
Lesson ten: One simply does not 'get over' MS. It's not mind over matter here folks.
I still don't want to wear a shirt in order to educate the masses. I really don't. I am sharing this because it's true. I know I look normal. In fact I'm glad I look normal! Don't let that fool you tho. Behind that 'normal' facade is a hot mess of crap I wouldn't wish on anyone.
Click here to donate to Sonja's surgery fees
