"I have a friend, who has a friend..."

[KyleW]

Without fail, everyone who has learned about my recent MS dx has responded with some variation of Friend, or Friend of Friend, has MS and is doing fine.

I know they mean well and are trying to be reassuring. But I can't help feel that their response minimizes the disease. This ain't the common cold and not everyone who has it is doing fine.

How do others feel about this?

[Jules A]

I totally agree with you when it comes from people here who have MS minimizing it because I feel that smacks of denial and is an insult to those whose lives have been ruined by this miserable disease.

However for the general public and especially those who love us and want to comfort us I don't take any offense. In fact I prefer them to make light of it compared to to the ones that look at me with in pity in their eyes.

There is no winning with this miserable disease, just hang in there as best you can.

[BigA]

I had the opposite -

Co-worker: "My SIL has MS"
Me: "Oh, how is she doing?"
Co-worker: "Terrible, she can't walk, is in pain..."
Me: (depressed). "Oh, thanks"

When I was first diagnosed, I was expecting to be in a wheelchair in a year and was searching desperately for anyone who continued to work. For me, the few positive stories I could hear, helped me.

But I understand the problem of no one understanding what you're going through. I suppose it's similar when people get cancer. It's either "OMG, I'm so sorry", or "My aunt had cancer and that was 20 years ago".

I would try to take their words as positive. So how are you doing?

[oso49]

You can't blame them...they just don't know...

[BeneathTheLies]

I feel you on this one. I find it somewhat rude. I know that they mean well when they say this but it drives me nuts. When i was diagnosed i got the call at work, luckily i work with my future MIL, and i didn't even bother telling my boss that i had gotten a definite dx. Throughout the entire process he kept comparing me to his wife (who is a hyprochondriac) and telling me not to worry, there was no way it could be MS. Well i guess he was wrong.

Sorry went off topic a bit. I have gotten alot of i know this person who has MS and they're doing great. Or you get the opposite where they tell you how bad someone is doing. In my mind, it's bad enough that i don't know what this disease will do to me i definitely don't need someone pointing out to me the best and worst case scenarios. I can find that out on my own, and cope at my own pace.

And if i do progress at a rapid rate and the DMD's don't work for me, i certainly don't want to be compared to someone else's progression escpecially if they are doing much better. If i have learned anything on the forum, it is that MS is different for everyone and no one has it exactly the same. I don't think it's fair to us to have someone with limited knowledge judge our progression. I feel bad enough about having MS but that's a whole other ball of wax.

Good luck,
Heather

[Waydwnsouth1]

I agree! The same thing happened to me when I was first dx. Finally I had enough. The next person that told me that caught an ear full. I said "Oh really, doing fine, well did they happen to mention that their hands, feet or both at the sametime go numb. Did they happen to tell how they will get dizzy for no apparent reason and have trouble walking from time to time and list could go on and on." I said "Let me share something with, when you just asked how I am doing I told you I was fine." "Well can you tell by looking at me I am having trouble seeing, can you see my muscles twitching and can you tell my feet feel like I am standing on hot coals?" NO YOU CAN'T!

It is convenient to say " I am doing good." We do not have to go into explantions that you will not be interested in nor will you understand it. Sometimes I will say " I take it day by day. Somedays I can walk and talk and somedays I can't, but other than that I am great." I usually get a dumbfounded look.

[jkp79]

I really hate this!!!!!!!!!!!!!!!!!!!!!!!!!

I mean I am glad that this other mystery person is doing so great, but................

Anyway, I know exactly how you feel and even though that person is trying to be optimistic fo you, it does make you feel like they are down playing what is happening to you.

I just try to tell myself that this person is trying to understand something that hopefully they never have to.

[Justsayyes]

There are very few people in my life who say anything truly reassuring to me. The last comment from an old friend was that MS doesn't really do much to you.....(Really?) and she added that she didn't think they even studied it anymore. (Guess it isn't trendy enough these days in her view?)

A few have gone the other direction and told me I'd be disabled soon, then stopped communicating with me altogether.

Over time I've learned who I can talk freely with and those I can't. I continue to be very selective about who I tell.

That is why it is so nice to have a place like this where others get it!

[jojo18]

if it is coming from someone who doesn't have MS and they say that they have a friend/ friend of a friend with it i feel they are pushing it aside like its not a huge deal and that anyone could deal with this w/o feeling down.

however if it is someone with MS that says they are doing fine AND tries to console you and try to make you feel like its not the end of the world, it helps

[jcrain9663]

My personal favorite is...

"Oh, MS? I think that is just the latest 'fad' disease that doctors give you so they can make money."

Then a launch into a diatribe against people who think they're sick, when they're really not. Seriously, you can't see me standing right here???

[heliotrope]

People do mean well, but I find it incredibly unhelpful. I knew very little about MS when I was first diagnosed.
I had friends who did the same thing - I know so-and-so and MS only effects them when...

Unfortunately, my MS hasn't been nearly as mild as they described.

It's a catch-22. People are trying to be comforting. It just doesn't help.

[KyleW]

I really do believe that in most cases the response is coming from the best of places. I also think that it gives some people a way to process, and a place to isolate, bad news.

"Oh, Kyle just told me he has MS. Well Martha has a friend, who has a cousin who has MS, and she's doing just fine. Now, what are we going to have for lunch."

I guess how we process the response is just another itme on the list of things we get to manage

[valeriem2220]

I get this too.
I would love to say to these people...do some research before you act like you know everything about the disease and become my personal judge, but I don't.

I have gotten the..."I think you are overreacting because I know so and so with MS and they are fine"

I usually just respond with "I'm happy that they are doing well, I hope it treats me as well"

[GIGI69]

I Agree

But what can you do about it? Yell at them and look like a maniac ? Or realize they mean well and go on about your business.

The one that really drives me crazy is when you describe a sx because they've asked and they tell you they have the same thing. NO! It's not the same thing. It is not a herniated disk, carpal tunnel, or anything else you are describing unless you have some other neurological DISEASE! Breathing Deeply To Calm Down

[Campingirl]

I get very annoyed by that. My friend said to me, "a friend of a friend has MS and she doesn't feel like she has MS at all." What's up with that? Is that even possible?