Monday, February 16, 2015

11 Things Not to Say to Someone with MS...and What to Say Instead

1. "You look so good!"  

"I know right?!?"  This one used to bug me a lot.  I know it's shocking that someone so sick could look this fabulous, but do we have to put it right out there that you expected me to look horrible?  Granted, some days I really do look awful.  And some days, I look like a normal person.  What isn't helping is your proclamation of shock.  

What to say instead: if I really do look great, comment.  Otherwise keep the shock to yourself.  Ask about what beauty products I use to keep the gray skin and dark circles away.  Or, take the route my Daddy takes: "You look like shit today".  Why thank you. (I love it.) 

2.  "My mother's best friend's sister-in-law's cousin's roommate in college had MS........"  
This is in itself a harmless thing to say - it's a connecting communication statement (we as humans always want to connect and will try and find that common dominator anywhere).  However, every situation with MS is different.  MS is known as the snowflake disease - no two cases are the same (so annoying).  

When this is said to me I find it very difficult because I not only have a snowflake of this disease, I have the whole freaking blizzard.  So while I always want to connect with other MSers, please don't think it is the same.  Because most likely, it is very very different.

What to say instead: "I know someone who has MS.  Their MS story was like this - how does that differ from yours?  Also, would you want to connect?"

3. "How are you?"  

I wish that we could ban this question from all humanity - it's so #basic.  I honestly and truly don't know how to answer it.  In late I've just been keeping it brief: "My legs don't work but my spirits are high.  How are you?"  This makes me feel that you really don't care to know the answer, but feel obligated to inquire. 

What to say instead: be specific.  "Have you read anything fun lately?"  "OMG did you see Kelsey on the Bachelor?"  "What are your highs and lows of the day?"  "Want a starbucks?"

4. "I have a cold and am stuck in bed and it made me think of you because this is what you feel like." 

Nope - not exactly.  I appreciate the sentiment.  And I am really sorry you're sick.  But that is not what I feel all.  

What to say instead: I still want to hear your lows; don't hide them.  I'm also not discounting them because they are not be as low as others.  However, "I have a cold and am stuck in bed and it sucks!!" works a lot better.  Instead of saying you have a whole pie of my life, you have a slice.  And it tastes awful and you're sympathetic.

5. "It must be so nice to lie in bed all day / not work full time / stay in your pjs / not be a functioning adult."  

Oh my gosh it's the funnest!!!  

What to say instead:  "I'm really jealous of your life and want to trade you."  PLEASE LET'S!!!

6. "Have you heard about this diet/supplement/oil/exercise/miracle mantra?  Have you heard about Terry Wahls?  This will heal you!!!!"  

So, just in case you didn't know, I'm a google freak - I google everything.  I also am kind of smart.  Put the two together and you can be sure that I've read/studied/discussed everything there is to know about multiple sclerosis (and if I haven't, my mom has).  When I hear this I think two things: thanks for thinking I don't know my disease and, are you judging me? (that if I just ate something different I wouldn't be so sick and thus am so sick because I'm not eating something different.  It's really as simple as it sounds right?).  

Let's be clear on something: there is little to no proven scientific knowledge about MS and connecting factors (besides Vitamin D...take your Vitamin D!!!).  There is a lot of progress in various areas but none are 100%.  

Yes, I know who Terry Wahls is.  Yes, I know that she was in a wheelchair and 9 months later was able to ride a bicycle for 13 or so miles after changing her diet.  (Sounds like a familiar story....).  I've watched almost all her youtube videos and have read her research.  I even inquired about participating in one of her studies at the University of Iowa (I didn't qualify...which is just one of the reasons why I find her studies puzzling).  

I am not doubting that diet has something to do with quality of life.  It has a direct correlation and I have made changes to my diet that hopefully enhance my life and my bodies ability to care for itself.   I also enjoy talking about health a lot - it's a very common theme in my life.   

However, a diet will not cure me.  It didn't cure Terry Wahls.  Anyone who claims that a diet/supplement/etc has cured them either didn't have MS or is in remission.  I am excited for them that they reached a good spot.  But don't throw your magic wands in the air and call it a cure. 

What to say instead: "I found this interesting article - have you seen it?  What are your thoughts?"  "Want some french fries?"

7. "What can I do for you?"  

This is a hard one to answer only because I have high pride levels - I don't like being in situations where I have to ask other people to do things for me.  Even though I wrote a post on how you can help, I still have a hard time approaching this when asked up front. 

What to say instead:  If you were in my position, what would you wish people did for you?  Then do that.  I will guarantee I will love it.  Plus it will show me how you like to be loved.  

Or..."What's your starbucks drink today?"

8.  "I had the worst day ever!  I was late to work, I spilled my coffee on a new shirt, I just couldnt even at work, and then got a parking ticket!!!"  

Honest reaction?  "Suck it up princess!!!"

This goes with #4; again, I want to hear your lows.  Don't hide them - but have a little perspective.

You spilled your coffee, my legs aren't working.  

What to say instead: well, to be honest, I have little sympathy for #firstworldproblem comments.  However, if you must: "I had a really bad day and these are the reasons why: xyz.  But then I got some fro-yo and got over it."  Gold star!!

9. "I want to help what I'm thinking is you send an invite to all your friends and family to promote my business endeavor and I'll donate 25% of the proceeds to you."  

Compliments for seeing the business opportunity to pimp out my disease - props. 

But no.  I'm not going to bother my friends and family with the burden of a Thirty-One bag party so you can reach your monthly numbers.  I'm sure your intentions are good - but again, no.

What to say instead: just don't.

10.  "I'm praying for you".  

When did Facebook comments become a way of prayer?  Did God get Facebook and I missed it?!?

Joking aside, I know a lot of people really do pray for me and I appreciate it so much - the prayers are really what gets me through.  Thank you. 

But it doesn't count that you wrote it unless you pray it.  I'll be holding you to those prayers if you say you are going to.  

There's also the old age line: actions speak louder than words.  Dropping a prayer is great but what about making a trip to the hospital to visit the sick?  Do not fall short!  

What to say instead: It really is an endearing sentiment and I don't want you to stop saying.  Just mean it.  And do more if you are able.  

11.  "......"  

Ignore all the above...I'd rather hear any of it than nothing.  I'm alive - let's celebrate!  Please don't give up on this yet. 

What to say instead: Anything!  I really do appreciate all the words you have to say.  

And if you happen to say something that's just stupid/odd/weird/annoying, you'll just give me motivation to write "Things Not to Say to Someone with MS numero dos".  Everyone loves a sequel - bring it!