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

[Lexie]

I have been very "let down" by friends I just thought were friends especially at work. I know it is a "ME" generation but no one seems to care. I don't want sympathy just understanding instead of "You just can't be hot today" It is really cool in here." after I have said that most MS patients have problems with the heat. This board has made a difference in my life because you all understand when very few others really understand. I just try to be patient but have found myself being happier sometimes just being alone and not having to deal with stuff like this. I am blessed to have a truly understanding family and sometimes this is all I need.

[cosake]

I think we have to try not to take these statements personally, however hard that might be. I really try to brush off most of what someone else says about MS, unless it is someone who has MS themselves.

I think everyone is just trying to have a frame of reference and linking things they know together. Most people don't understand how unique MS is. We can't expect your everyday regular person to know or understand about MS. Saying they know someone with MS is their link/connection in the conversation.

I think most people mean well and don't realize that they really don't know anything about MS. Or don't realize until something comes out of their mouth how bad it might really sound (those that say the person they know has really bad MS, etc.). I've opened my mouth and inserted my foot a few times myself and never realized it until later. Then I slap myself on the forehead and call myself an idiot !

[terie-tk]

Alot of these posts..

are the reasons I don't share my medical status with most people.

I don't want my MS to be the topic of conversation. I guess it takes up enough of my life. I've only shared with some closest friends & family. But this is just me & how I chosen to deal with MS.

[Thinkimjob]

It's a 'just heard the news and don't know what to say' thing.
Most people mean well, I suppose.
Very few people genuinely want to know how anyone else is really feeling physically or emotionally.
And not many of us really want to tell them, either.

[onlyairfare]

I agree with those who say this is the reason they do not discuss their MS with others. I rarely mention my MS to anyone who is not my doctor, my child, my husband, or my very good friend of many years' duration.

I do think these people mean well and are just trying to paint an optimistic picture for us and IMHO they are light years ahead of those who drop you like a hot potato once they hear your diagnosis. To some degree I think they need to reassure themselves too against the fear that "Gee you look healthy but are still sick. Could that possibly happen to me?"

And if this is a "fad diagnosis" doctors concoct just to make money seeing patients with fake diagnoses, why is it so hard to find a neurologist that will see us sooner than six months from Tuesday? I don't think neuros are out there trying really hard to find more patients to fill up their empty schedules. They are already too busy.

[AnneLouise]

"I have a friend who has a friend..." Sounds like an urban legend!!

But, seriously, I hear this a lot, also.

My friend's mother had ms, and she was pretty bad. Bedridden. The whole nine yards. She died from complications from ms. My husband had a friend that also had ms and went down hill rather quickly. So we know what can happen.

When friends and acquaintances ask how I am doing, I tell them I'm fine, doing okay. They don't know about the numbness, pain, walking and balance issues, and so on. I don't tell them because they don't need to know, and what can they do anyway? I think they're just trying to be supportive.
Even if someone has ms and still can run marathons, they have physical problems somehow. Ms is no picnic for anyone. You never know what will happen from day to day. And that applies to people without ms!

So when somebody tells me they know so-and-so with ms and they are doing fine, I think that is just what they're being told by the person with ms. People really don't know, unless they have it themselves.

[KyleW]

My reason for bringing this up was not to diminish peoples response to my news. Depending on how, and who you tell sharing this news can be like hitting someone in the face with a frying pan

I have never thought that people don't mean well. It would be a challenge to come up with the 'right' response on the spot. I think part of why I posted was to begin to express my anger at MS rather than well wishing people. I'm still angry, but I'm finding more constructive targets

[502E79]

Thinkimjob...

... stated everything I would have said in short succinct sentences....

That's the reason I have not told anyone of my MS. Good thread Kyle!

Jer