This Is MS Multiple Sclerosis Community: Knowledge & Support

I recently worked with a woman on a short-term basis. Intelligent, an elder stateswoman in my field, and the sort of person who has the tendency to talk as if you're having a conversation and then not listen as you respond.

At the beginning of our assignment, she was catching a cold and inevitably, by the end, I had picked it up. She gave me her remaining cough drops and condolences, saying something to the effect that she hardly ever gets sick, and going through this bout gave her sympathy for people who deal with long-term, chronic illnesses, you know, for what they must go through. I stood there, silently debating whether I should say something, and decided not to.

It struck me how odd it is, to be in a situation where someone, had they the knowledge, would never dream of saying something potentially hurtful, yet because they can't tell from looking at you, they make a completely blameless yet painful remark. I wanted to say something like "Well, it might surprise you to know that I've got partial, permanent vision loss in my right eye due to MS and, darn it, you just never know what the sucker's gonna do next." Or "I understand your feelings. As it turns out, I have MS so one of the very people you're feeling for is standing right here."

Yet, given the likelihood that I'll never see this woman again and her propensity not to truly listen, I decided there wasn't much to be gained.

I've been deciding that a lot lately when I think about telling people. It's not like me to withhold--whether that's a strength or a weakness is debatable. Probably either, depending upon the situation. But for me, it's always worked better to "talk things out," as my father calls it.

Plus I want to be able to make MS part of a regular conversation. "Hey KG, how's work? How's your husband? How's the MS?" Something you can talk about that doesn't get The Reaction.

The Reaction has come to me in several forms. The most common is for people to continue to talk to you as their eyes widen and grow distant, not knowing what to say even as words are dripping from their mouths. Another version is where the person uses a lot of expletives and interjections, as in "Wow! Sh*t! Geez! That's f**ked up! Gosh! F**k!" And there's another slightly more rational version where the person says "You know, I know two/three/five/twenty-eight/ninety-six other people with MS" and proceeds to tell you about those who are faring the worst (I've gotten better with those--I cut them off by asking them to only tell me positive stories about other MSers, thanks.)

I hope this all doesn't sound bitter. It isn't. It's just so darn American.** I mean, we do not do well with bad news, people. We don't like it. We don't like pain and we're not well-equipped to deal with it. Suffering is not supposed to be part of life. Feeling bad? Shop! Feeling too bad to go shopping? Shop online!!

Me, I'm not one to hold back. (Shocker!) I just want to be able to talk about this thing without it dropping the floor out from under the person I'm talking to. I want to normalize it, make it smaller by making it part of the ordinary, everyday lexicon. But, as the jazz group T. J. Kirk's latest album title asserts, Talking Just Makes It Worse.

I suppose if I had visible symptoms (and apologies to those of you who do), it might a) alert people that there's something going on and b) prevent them from saying something awkward. Of course, I could be entirely wrong. Do those of you who walk with a cane or are in a wheelchair find you meet people who you can tell are itching to ask why you use a cane or a chair but don't dare? Do they come out with, not to put too fine a point on it, plain-old stupid remarks? Do their looks just speak volumes?

It's sad that we don't retain some of the innocence of children. Little kids will run up to you and say "Hey, how come your hair is blue?" for the very, sole, exclusive, only purpose of FINDING OUT. No hidden agendas. No ulterior motives. You can take them by their word and at their intention. They merely want to know and understand.

I guess that's all I reallly want from anyone. For them to want to know and understand.

**Which is not to say that we Yanks have the lock on inability to deal with painful topics. I'm sure other cultures have their unfair share. But I'm American so I can only speak from this vantage point.

Fantastic!
Can I print this and hand it out.
Very well put.
Terry.

I found myself even mentioning it to the electrician I had at my house today. I held it on the tip of my tongue for a moment and then just added it into the conversation. I think to break down the barriers or to get MS known out there is we have to tell people. More awareness the better. Does it really matter who knows? Why is it an embarrassment to tell? Or are we not looking for any kind of sympathy reaction? It is a personal decision. I had an odd sitution at an airport once where a guy sitting next me said I have a bag like that. It was my cooler bag for my Betaseron that the drug company had provided. I looked at him and looked at the bag and the penny dropped. He had MS too. Its not like we all run round with labels stuck to our foreheads but thought it was amusing at the time. Here was someone that I didn't know and wouldn't have a clue he had MS but I was thankful he said something. I find the best way is just slip it into the conversation when suits or theres the opportunity and then carry on the conversation don't stop for their reaction just keep chatting away and you can see the (oh) look and they keep going as well.

Great article you have written by the way

I have the same issue with whether or not to "share" private info, like my ms, and all that it entails. It has taken me 4 yrs to figure out how to gauge who to tell, whom to not tell. My mother -in-law is sincere, but has a weakness of spilling the beans, so I would not wish to share my occasional incontinence probs with her--the kiss of death. I am half her age in the midst of the throes of this malady, yet she has never had more than a cold, so I find myself feeling quite intolerant of her naive ignorance.
I save the sharing for people who have passed my rigorous testing of compassion and discretion--meaning fellow ms'ers and precious few others.

*Sorry if I sound bitter-not trying to be

_________________
Holding out hope for Liberation!

Actually John and I've told all our friends and family right at the beginning when John was diagnosed (Jan 2005). They went through the stages with us. The shock, the worry, the pity, the anger and then lets get on with our lives. We all talk about it like you would anything else. It is not made a big deal of but it makes 100% difference if we ever do need to call on our support team. We are all aware of some of the changes that might need to be made. At the beginning of summer before John's body heat regulated the neighbours on either side were planning to mist their lake front area as well as ours so John could come out to play during the day.The living like a bat was driving him nuts as it had been 4 or 5 years in duration. John has been extremely lucky right now in that all his symptoms other than ON have disappeared. Build you team now before you need them and they will be part of the solution with you. Maybe it's all in the delivery and digestion. John does not feel the need to tell every stranger nor is there any point to it in our opinion. Every appointment we go to at least 2 siblings attend as well so that we get all the information. We are also lucky in that one of John's sister is a nurse so she has been invaluable in teaching proper injections so that he ends up with no site reaction other than the rare times when he rushes and either preps the depth wrong or doesn't let the alcohol dry. We never feel alone in this there are just to many friends and family willing to help.

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John was diagnosed Jan 2005. On lipitor 20mg .On Copaxone since July 4,2005. Vitamin D3 2000iu-4000iu (depending on sunshine months)June 10 2005(RX::Dr. O'Connor) Omega 3 as well Turmeric since April 2005. Q10 60mg. 1500mg liquid Glucosamine Nov 2005.

well i find it a great help to listen on how everyone else has dealt with it..when they first started to tell me i might have i got information for my ex husband to look over cause when it comes to the kids i want him to understand what is going to be support to the kids in this...they ask why i am limping and why i am so tired and why i have all this testing done..things like that...i tell them right now the doctor is trying to find out what i have...my ex looked at the information i gave him and asked why he needed to know...i said to be supportive to our kids if things get worse..he shugged his shoulders...i guess it would be one of the reasons i am now his ex...no compassion or understanding on how something like this affects the kids...i found out last nite i have the start of vision loss in my right eye..the eye doctor says it might get alittle better in a couple of months but wasnt sure..if not will have drops for my eyes...to slow down the vision loss...now the rest of my family and new boyfriend are supportive..my boyfriend is just a little impatient about it..want s them to start helping me right now and help me get better...so i guess in life you will run across both kinds of people..which each person will have thier own response to each type...i have a temper..well by the name you most likely already figured that out...right now i just dont have the energy..maybe later i will get irrated or get smart with them...but hopefully i will deal with it.in a polite way...cross your fingers for me.....

Thank you. Absolutely. But please do me a favor and correct the typo I left! ("expletive," not "explative").

Karen G, you are a great writer, and a great thinker. I appreciate your comments and the comments of others posted here. I too struggle with this very thing every week.
I was dx'd almost two years ago. I made the decision to tell very few people, maybe more out of pride than anything. I don't have visible signs as yet either, and that makes keeping it in much easier. My fear? Being labeled "That guy with MS". The thought of being referred to "that guy with MS" or even worse, "He probably didn't know what he was saying/doing/deciding.....he's got MS you know"... is just too much.
Is that rational? No, probably too wrapped up in pride, which isn't a good thing. I really like the comment above about building your "team" now, not just when you "need it", but wow, that's like Mt. Everest to me. I'm human, and occasionally, I think it would be nice to have some compassion at times, but even more, much like Karen was bringing up, it would be nice to just have it be part of normal discussion. I love the kids / "blue hair" innocence part above. I wish I had the ability to assume that level of honesty in everyone with whom I come into contact. I need to work at that very hard.
In the meantime, for those few that I have told, it's been a mixed bag. Some have been great, some have turned and "run away" and mostly, I end up wishing I had "Just kept my heart out of sight".
Thanks for your discussion here. You can tell from my comments that its an active war zone in my mind about what is best to do here.

Hi Karen
I've had MS for 15 years since diagnosis and have been visibly affected for a year. I am always open about it and I find that the more comfortable I am about it the more OK people are about asking me how I get on and telling me about others. Though in my case because I'm a nurse and "handling it so well" people tend to tell me "My sister just got diagnosed can I have her call you?" I have many people that I mentor in this way. I also tell people right away because if I do not they will think I am drunk, and I talk about it on my website so people know it about me before they meet with me.

Once a client came to see me and I started to tip over as only a person with MS well along can and he shot out a hand and said "whoops! just about lost it there!" He was smiling in a friendly no-big-deal way.

I find that I have gone through various stages of mental postions with it: At one time I felt shamed to have this disease like there before the grace of God goes:-what- everyone else who does not have MS? Where's that leave me?

Then I was like a warrior about it: One in a thousand will get it. I am that one. I took the bullet for 999 others so to speak. Let them open the door and help out once in a while. It's my journey but they can help alittle bit.

Now it just IS. It's real, it's there, and lots of us have it. I think it is good to talk about it for by doing so as Melody so well pointed out, you get your team in place.

The other day my husband was on a trip and I was alone. Racoons and crows spilled my garbage and of course the guy won't take garbage that's all over the street. My neighbor, who I rarely visit with because we are very different (though I am friendly with her) came right out. Marie! Let me help! She literally had my back. That's support and it makes you feel less alone, because you aren't.
Marie

Why, thanks!



I can totally understand how you feel, SlowI. And you can only be who you are so try not to beat yourself up about it too much.

Many years ago, when I was in my early twenties, a dear friend was diagnosed with AIDS. This was back before the cocktail, so he didn't have a lot of time. My boyfriend and I both found ourselves drawn closer to him, and he told us that a counselor had told him that he would find that some people would draw closer, while others wouldn't be able to handle it and would "run away," as you described. Those who can't handle it, well, they'll find out some day what it's like when the time comes for them to face something they wished others could handle with them, because we all do, eventually.

I have thoroughly enjoyed reading all of your posts and hearing about other's experiences.
I was diagnosed in 1998 and at the time 'looked fine' ;0) I found myself letting people know as was necessary. My experience was that most people were shocked because of their own pre-determined notions re: MS and what someone with it should look like. I was happy to be a part of educating those folks. I was able to continue working until I had a baby in 2003.
It was at work where I found the strangest responses to the MS. I would consistantly have to remind my employer that I could not work in the office if it got too hot, I could not safely carry things around the office without risk of losing balance, i had to wear sturdy shoes..not fashioniste shoes...etc. I found myself constantly printing out research and circulating it, and felt I was always on the defense. I think there were some folks that thought I was exagerating or faking in order to avoid work. That was crazy and very frustrating. I chalked it up as fear and ignorance and made the best of it.
Now, I have to use a walker and have a brace on my leg for drop foot. I constantly get asked 'what did you do to your leg', or 'break your ankle?'
I always smile and reply "i wish. My leg is fine, its my brain that is broke. I have MS". Then I get a mix of responses. Some people want to run away because they cant believe they just asked me..lol. Some people get really sad and start a pity party. And then some actually ask me questions and seem to really want to know more.
Humans are interesting creatures. I believe most people are driven by fear and paralyzed by the 'unknown'. I actually had an incident last year where I fell just inside the lobby of an office...my walker tipped over and i was just sitting there. Three people walked past me, didnt ask to help, didnt ask if I was ok, and didnt make eye contact. That was something I will never forget. The irony is that I would have politely declined assistance because I wanted to be sure I could help myself out of such situations. Finally, a girl who appeared to be around 11 yrs old came out and asked me if I needed help. Bless her, and her parents! ;0)
My favorite MS reaction story has to be the faces on the people at the amusement park. I of course was in a wheelchair to get around the park. My husband and I followed all the rules of entry to the rollercoasters...which usually allow for no wait in line and pick of your seat. When the folks who had been waiting in line for 2 hours saw me roll up and then be able to stand and get in the ride...they just looked so mad. The eyes were rolling, the stares where there. lol...I mean did they think I was 'faking' so that I could get cuts in line?! geesh
Little do they know that I would LOVE to be able to stand in any line for 2 hours in the blistering sun. It would be a luxury to me :0)
Heather

_________________
I say,
It's the fire in my eyes,
And the flash of my teeth,
The swing in my waist,
And the joy in my feet.
I'm a woman
Phenomenally.
Phenomenal woman,
That's me.

OK, I'm just amazed that you went on a rollercoaster. At the height of my ON attack, I also had vertigo (which in retrospect I realize I've had periods of for years) and the absolute LAST thing in the world that sounded appealing would have been playing with my sense of balance! Good for you.

lol..thanks for the kudos! I cant go on any spinny type rides anymore..but the rollercoasters and thrill rides are still doable. I love em.
Heather

_________________
I say,
It's the fire in my eyes,
And the flash of my teeth,
The swing in my waist,
And the joy in my feet.
I'm a woman
Phenomenally.
Phenomenal woman,
That's me.

Hi! I don't get to read the forums unless I can't sleep at night, so here I am!

In the past week, two separate trips to WalMart have ended with the cashier asking me if I "hurt my foot". I have been walking with a cane in public for about eight years now. Without it I can't walk very confidently for more than a few feet. I don't mind walking around with the cane, and I don't mind telling anybody why. I have always been upfront about having MS.

I am obviously disabled now. People do seem to think that we are cheating by using disabled accomodations, don't they? Once when we were parking at a Target, my husband got out of the car first, and a man yelled at him and said, "you don't look disabled to me!" I crawled out of my side of the car and waved my cane and yelled back at him. I think I said, "do you think I like being like this?" I am a meek person, usually; this just enraged me somehow. People want to see proof that we are really disabled, and if I forget my cane at home I guess I am suddenly ablebodied. Actually, of course, if I forget the cane I really need the parking space even more!

On the other had, a lot of people hold open doors for me! I always thank anybody who helps me, because they are trying to be kind. That takes effort, and nobody owes me anything, so I appreciate it. I thank the grocery workers who help me get my groceries in the car. I thank the person who holds the elevator for me. We need to care about each other, and we need to be grateful and thank each other. I think it does something good to our souls when we acknowledge the kindness of others.

So, I guess what is happening is, we are disrupting peoples sense of normalcy, and some people would rather not notice; while others may overreact and try to 'fix' the situation. I can't pretend to be normal anymore, and I wish it didn't make a difference to anybody else, but at the same time I really do need to be treated differently than I would if I were 'normal'. This is one of those problems that can't be solved.

So, take care everyone! I think morning is about to happen...
Ronnie

Hi Karen and everyone else that responded,

I havn't posted in a while. All of your stories are very touching. I think you just have to feel comfortable with who you decide to tell.

Me, I told my family and all of my close friends and a few people at work. It was hard to deal with, even with the support of my family and friends. I couldn't imagine having gone thru all the tests and the diagnosis without all of them. Especially my husband and children. They have been the biggest cheering squad a person could have. I am not happy that I have MS but life goes on and I take one day at a time, and I know that I have don't have to go it alone.

_________________
Karen (OneEyeBlind)

* I don't suffer from insanity, I enjoy it!