There's another side of MS Awareness (which I'm FOR, by the way)

While I was working, I had reasons for not advertising all of my symptoms. I thought once I retired, it wouldn't be an issue, but it's not that simple.

I don't want my family to hear "cognitive dysfunction" and think, "Should she be driving? Is she remembering to pay her bills? Is what she's saying true, or is she confused?"

And I have some symptoms, mostly occasional, that I don't want to talk about at ALL, much less have people thinking about every time they look at me.

Just a couple of examples of how "awareness" is a two-edged sword sometimes.

I agree with you... unless my hubby can "see it' tremors, spasticity I don't tell him.. don't want him to worry.. he now works 4 1/2 hrs away and I only see him on weekends until we sell the house.

Cindy

Yup. With you on this one.

I totally agree with you on this one. Apart frm the fact that I don't want to appear like a major whinger or wet-blanket to friends and family, the cognitive side terrifies the heck out of me.

It is sure enough hard to come to terms with all the MS stuff ourselves without others making judgements about us. The cognitive side is particularly delicate - as you have said, people may look at you, and treat you differently.

So yes, it is a double edged sword.

in the early days, I was vocal and everyone wanted me to share with them. As days passed by and friends fell away some made the comment that they couldnt hear it anymore. I said YOU ASKED! do you want me to lie? and some said...yes! I want to be able to ask my friend how are you, and hear a short simple to the point "im good, and you?" without having to hear that the heat is making your MS crazy or your vision is better today, but still not quite right. So...I shut up.

Now when folks say "how are ya?" I said "im good! and you?" so, unless I have some horribly visual stuff that I cant hide, im no longer sharing. Folks only want to hear it a couple of times, but as far as being a long haul thing...nope, they get tired and want to run off. Well, I want to run off too!

im with ya. dont tell um!

There are just a few people that really want to hear the truth. And I know who they are. They're the ones who know I'm stretching the truth to say "I'm good" and tell me they know otherwise.

Anyone else I just say "I'm good...how are you". And the ones who don't want to hear how I really am are the ones who launch into a detailed explanation of how they are!

It all depends on who is asking and why as to what I might share with them.
Having said that, I think that it is vitally important to have at least one person who knows what is going on with us and who can just be with it, without feeling the need to remedy the situation. This forum really does serve that purpose. Thank you.

A friend who is my confidant once said this to me.
"I don't know what to say or what to do when things are not good for you. What is the best response to someone who is having problems that I don't have a solution for? Part of me just wants to hide or avoid them, yet I feel badly when I do."

I told her that the best response is the honest one. "I'm sorry that you are going through this."

Nothing more needs to be added. Offers of assistance are appreciated for sure, but just the expression of compassion can be the greatest gift to both the one who is suffering and the one who wishes that the situation were different. It gives both the courage to face the most difficult of situations.

It is hard when our friends drift away and I've even had the experience of someone who I was close to once, avoid me in a public place when she saw that I was on crutches. I know that it was fear on her part...the not knowing what to say...so she ducked away into the crowd for safety. It broke my heart and I wished that I could have told her that a simple "I'm sorry...", works when we don't know what else to say.
It replaces our fear with courage when we encounter those who are having problems of any nature.

When I have shared this response as a suggestion to others who have friends and relatives that are facing challenges, they have been thankful to know that such a simple response is all that it takes to maintain the bond...no strings attached.

How sad that many adults don't know this...but most children do.

Erika