MS Monday – People Say the Darndest Things

chronicWhen I was first diagnosed, I remember waking up from sleep one morning with an idea on my mind – You must write something about what people might want to avoid saying to someone with MS. It was such a clear cut idea, I got up and wrote the first draft – 3 things you shouldn’t say… . After about 2 weeks of working on it, I became bold and sent it in to Momentum which is the NMSS’s magazine, and they accepted it! Well out of this came responses from people and the editor of my piece was kind enough to send me some of them. I read them with a mix of awe, outrage and understanding. I think anyone who has had – probably any illness can relate to the at times strange suggestions of well meaning people, it doesn’t seem to get old. Last week I saw this list for the first time. It’s amazing to see that things haven’t really changed that much.

This is a list of comments that I have experienced personally:

Why not just take a nap if you’re so tired?

Ah, we all have lesions on our brains!

Have you tried this supplement? It works wonders

Maybe you should become a vegan

Have you listened to that woman’s presentation? She cured herself, I’m sure you could too!

You know, eating sugar caused this for you right? Sugar is the DEVIL!

I wouldn’t have pegged you to have MS (A doctor blessed me with that one, he didn’t seem to believe that minorities got MS… moving on)

My stepfather has Parkinson’s maybe that’s what you have!

You should lose weight, everything is better once you lose weight!

All you need to do is exercise more – you’ll be fine

What’s MS? Ive never heard of it, Is it something new?

If only you put your mind to it – I know you could do it (lift my leg)

And the kicker:

You should pray and ask God to forgive you of your sins, the MS might go away.
(Yes, that really happened)

Such comments have the potential to be hurtful, frustrating, and downright rude, but sometimes it doesn’t pay to return rudeness.

How to deal with such comments?

Well depending on the audience, it could be a teaching opportunity to explain a bit more about MS

A kind “Thank you”

A firm explanation of the alternative that you currently make use of (which is working for just fine for you)

Smile and nod, just smile and nod.

How do you deal with strange comments?

 

MS Monday – The Struggle is Real

5 mins I often wonder about this little sign.  I first saw it a year or two ago, and I don’t doubt its truthfulness, I just like to have what backs this up besides my life :).  Some people find it hard to believe that.  They want “proof”. Cold hard facts!

One day in January, when we were having yet another snow event, I made up in my mind, that although I could not shovel, I would try to help my  sister by at least throwing the salt down.  I was so happy I was able to do the smallest part of the walkway, and then when I finished I remembered that I had to get back in to the apartment.  By that point, I couldn’t walk up the stairs, so I crawled up the stairs – it happens sometimes.  I got to the top step and still unable to stand and step in – I knelt into my home.  I got in – victory!  Only that I could not get up.

In addition to being terribly tired, I could not feel my legs, so I didn’t want to risk breaking something by just hurtling myself up, so I tried easing myself onto the couch, rolling myself onto the couch, hand pressing myself onto the couch…by the time one of the rollings (with help from my sister) worked, almost an hour had gone by.  I remember while on the floor  just marveling – all I wanted to do was help. That’s a cold hard fact!

 

To learn more about Multiple Sclerosis see the links at the top of this blog.  To help find a cure visit:

The National Multiple Sclerosis Society

 

MS Monday – The Struggle is Real was originally published on His Work in Progress

March is MS Awareness Month!

Happy MS Awareness Month! I will be sharing a bit more about MS as the month goes on.  Something I have learned since my diagnosis is how little people know about MS. Even medical personnel find it a puzzle.
The more we can learn, the more we can teach!

This video is less than 3 minutes and is chock full of information. It’s been a while since it was first released, perhaps 3 years or so, and I think it’s safe to say that all of the numerical figures have increased.

I think, especially in this day and age, people have a difficult time caring if they aren’t affected. Unfortunate, but true. I don’t know how much I would know about MS if it hadn’t affected me.

You won’t be sorry you watched it!

MS Awareness is still a month Nationally– March but it’s celebrated this  week here (NYC)  I will celebrate MS awareness this month on my blogs.  Where’s my orange shirt?

March is MS Awareness Month! was originally published on His Work in Progress