did you tell your friends?

[sesebaby]

I am just curious if after being diagnosed you told your friends about it.I told my family and couple of friends and can't decide if I should tell the rest.I want to tell them because they are my friends but at the same time I don't know how to tell them.

[Bob698]

Heck, there's relatives I haven't told and I'm 12 years into this thing.
One of the problems with MS is the people who don't have it. You're opening a can of worms with the way they can react and its usually tough to predict how that will happen unless you're ready to spend a LOT of time explaining what MS is (and isn't).

[hope32]

Everyone who was around me during my big April '01 and April '07 attacks knows because my symptoms were really obvious (could barely walk, etc.) so they had to know what was going on. I've been fairly open about it since then but since my MS was pretty stable the last four years until just recently, sometimes I forget who knows and who doesn't. Honestly I haven't gotten a lot of negative reactions so I haven't regretted being open about it (yet; I know that might change, it's hard to know).

[heliotrope]

Yes and no. Some and not others. Why? Among other things, as already pointed out, people don't know what MS is. Some listen when you explain, and some don't. And I can't tell you how much "but you look fine" annoys me.

[twisterred]

Some friends and family were around when I was diagnosed. My co-workers knew because I was working full time, then.

Today, I only tell people if I want to.

Some people will be more accepting and encouraging than others. It used to bother me more, but now I understand that it's their issue, not mine. Most people though, are very nice but clueless. I was too at my diagnosis, so I don't take it personally.

[chibi_polis]

if i have interacted with my friends or family since june, then i told them. i am very upfront about stuff like that.

my younger nephews/niece know that i have a disease that "unplugs" the cords to "outlet" giving me problems on being a-ok. they are are that the outlet and the energy source are. :P

other people who do not know, if need be i will tell them if the time comes. other than that i don't make it the biggest issue in my life.

[hope32]

Most people though, are very nice but clueless.

That's been my experience, too.

[justacowgirl]

I asked the same question 1 + year ago here. I don't tell alot of people; but I did tell the people closest to me. I have gotten nothing but support.

Like chibi_polis I don't make this the biggest issue in my life. Sometimes it just comes up.

j

[zilphia01]

i told

chili_polis said
other than that i don't make it the biggest issue in my life.


I am 8 months into my dx and just now and starting to try to make that my "mantra". Until now, not so much.

I teach middle school and I told fellow teachers and students. I did not want them to think I was intoxicated with the staggering and tipping over.

I also have started using a cane (for balance) and have tricked it out, once with a sparkly feather boa and now with sparkly fabric, leaves and butterflies. so it is noticed, no doubt!

My feeling is tell, and know that everyone will not get it. I still don't get it all!!!! When they say something I consider "duh" or "ignorant/uninformed" I am not shy at all to roll my eyes at them and say some get real comment. Especially if they start on the "you would be cured if you would only....."

So I guess my point is telling really depends on you and your personality.

[lemstar]

I have told people, and their response have, for the most part, been mostly inappropriate. Maybe there isn't a great response. But most of my friends sort of disappeared. When I do talk to them, they ask in solicitous voices, "how are you doing?", and "are you better?", and "is it under control?". The only answer that doesnt seem to make people uncomfortable is, yes, I am doing great, and it is under control.
People also offer cures, and their perspective on something they don't know anything about.
As if this wasn't enough, 6 months after my diagnosis (at age 55), I wound up with an emergency colostomy. That chased away whatever "friends" were left.
I think people just don't know what to say, or how to react. So be prepared for that.

[BeneathTheLies]

I'm kind of still figuring out who to tell myself. I figure the people that see me on a weekly basis sort of should know. Alot of my close friends were there through the dxing process, so when I was told probable MS I told my fiance to keep it under wraps and I'll tell people if and when I want to.

I did tell my friend that I spend time with a least once a week, mostly because I was scared and didn't want to worry my fiance. She was so understanding and what she doesn't understand she asks questions and actually listens to the answer. She has by far been the best about all of this. My other friends know but they don't treat me different. They have just accepted that I can't do everything I did before.

My immediate family all knew right away but what's the point in sweeping it under the rug. The rest of my family found out through the grapevine but I don't interact with them more than once a year so I don't really care to hear their opinions.

My co-workers were also there through the dxing. I work at a small location with only 8 employees. It's hard to take time off for a millions test without giving the boss some idea as to what was going on. My neuro actually called me while I was at work to confirm the dx.

So far I haven't had any really negative reactions. Although my one boss's reply was "I don't know what that is so it must not be that important." People like that you really just have to ignore. If people don't understand and aren't willing to accept who you are now then they really aren't worth your time. You'll figure it out as you go and I wish you the best.

[cosake]

I have found that alot of people are curious and want to know more about MS.

They will say, "My best friend's cousin (or my husband's aunt, etc.) has MS but I don't know anything about it" or something like that. They know it exists but don't know what it is.

I don't begrudge people not knowing anything about MS because I didn't know anything about it until I was diagnosed.

I do get slightly frustrated at the well-meaning cures that people have suggested - like stop drinking diet soda (I NEVER drink diet soda - I think it's disgusting).

[sesebaby]

I guess the reason some people react the way they do because they don't know what to say.If somebody tells me they are sick I really don't know how to react either I feel like saying "you are going to be just fine" but at the same time I hate saying that especially if I have no clue about disease and I totally understand than people have no clue about MS because I know nothing about it either. I also don't want my friends asking me how I feel because thats that my mother in law does it and it drives me insane.

[Tomjadg]

Since we moved, and are in a secluded spot, I don't really have any friends.

At work, there is a small group of us in management, and I am friendly with them. I told them last year, and they are very supportive.

[jojo18]

I am 8 years into this, and 1-2 years ago i stopped worrying about who know. if it comes up in a conversation, even if it is a tangent, i tell. if they ask a question, i answer. i am open about my MS. being open has, in a way, set me free of the disease. yes, i have symptoms that i deal with everyday, but the fear of the social stigma that can come with it no longer, or will ever, affect me.

i would tell ur friends. how? just say it. bluntness has worked the best for me. but, i make sure they know im ok.

if/when u do tell ur friends, b prepared for all the questions that may follow. they want to know you are ok.