How do you tell friends you have MS?

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How do you tell friends you have MS?

Postby MattB » Wed Oct 08, 2008 7:35 pm

Ok, here's the story. I'm going hiking, which is something I usually do, but this weekend I'm going with friends and for multiple days(so camping as well). I don't want someone to see my copaxone and think I'm shooting up heroin or something and I'm just assuming it would be better if I let them know. Makes it a bit more complicated since there is potential romantic interest there as well. Maybe I shouldn't say anything? What do you think?
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Postby thinkingoutloud86 » Wed Oct 08, 2008 8:01 pm

Hey Matt-

I've wrestled with this one myself. Still don't have it completely figured out, but where I am now is that I tend to let others in to my "MS World" if I believe something positive will come out of it. For instance, I've shared it with friends/family who I've felt would be supportive. Also, will share with some women I date, but it is usually after at least a few dates and if I believe that there's potential of something meaningful to come out of it.

Haven't traveled or gone camping yet (on copaxone), but i've thought about this dilemma myself. It's a little trickier.

Hope this helps. Good luck and I hope you enjoy the camping.

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Postby Sharon » Wed Oct 08, 2008 8:49 pm

Matt -

Put the shoe on the other foot - if you had a friend with MS and were unaware - how would you react? :?:

Personally, my friends are part of my support group. Likewise, I am part of their support group - I guarantee you, they also have their issues. I admit that it was hard revealing my MS, but as I surrounded myself with people who knew of my condition it became easier for me to tell the next person. I am now able to say, "Oh, I have MS" and go on about my day - no embarassment, no excuses.

Good luck - I know this is difficult

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Postby ursula » Thu Oct 09, 2008 4:14 am

I don´t tell it to everybody - but to people I like.
Never had to regret..!
Besides that, why having a "secret life"? Is it a crime to have MS?
You can also find out how "nice" they really are...

I also like camping.
If don´t want to tell, you can inject when you go to bed - nobody will realize.
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Postby Miss_Feisty » Thu Oct 09, 2008 6:23 am

In my opinion ( I will explode if I can't share it) should tell.
Upon my initial diagnosis I wanted to keep it a secret. All it took was one person to find out to be the "informant".

I prefer to tell people myself, to explain what it effects and WHAT IT DOESN'T.

Having MS is not a crime or sin. We raise awareness and clear out misconceptions when we are able to talk about our condition. Taking out your needle in front of others is a good time to explain your condition.

As far as a romantic interest, just the fact that you are going hiking and are pro-active about your condition is admirable. If the other person is worthy, this will not be an issue.

The more people talk about it, the better.
Just my 2 cents.....which is currently worth 0.0001 on today's market

All the best to you.[/u]
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Postby TwistedHelix » Thu Oct 09, 2008 6:33 am

From day one I've told anybody and everybody, (although looking back, the postman, paper girl and rubbish collectors didn't look particularly interested), but in your situation I think I might hang fire for a while.
Very often when you tell people they will ask you if you mind discussing it, and if you say no you will then be bombarded with questions – sometimes along the lines of, "oh, that's that muscle wasting disease, isn't it?", so if you want to keep your trip free of interrogation, either don't say anything or get all discussions out of the way beforehand.
Another thought I had – and I know this sounds a bit devious – is to use the opportunity to test the waters: perhaps by saying that someone at work has just been diagnosed with MS, and see how people react. Might be a good way to gauge the reaction of your potential romantic interest,
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Postby jimmylegs » Thu Oct 09, 2008 6:40 am

heya matt, glad you're planning a fun trip! i had to turn one down over the summer - it involved a 6 hour drive out on friday and another one back on sunday, with a crapload of portaging in between. in the company of a bunch of triathletes. i know how hard i can push myself, and it's not that hard. not without making everyone wait for me, which i was not prepared to do with one friend plus a bunch of total strangers!

amongst people i know, i've never really hidden it, at work or much of anywhere else. i haven't noticed much in the way of consequences. one time it caused some stress when one of my co-workers ratted me out to the examiners while i was taking my level 2 ski instructors course, but i still passed. mind you i have never taken drugs for ms, so i don't have to explain the injection part of things in company or otherwise.

matt there are so many ppl on here with ms and so many ppl who love them. not to mention our members who are loving supporters of ms patients. i know where you're coming from, worried about the impression it will make on a potential partner, but i think we ms-ers can get to the point where it's like anything else - if they turn away because of it, they weren't worth it in the first place.

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Postby daverestonvirginia » Thu Oct 09, 2008 9:17 am

I have thought a lot about this topic over the past couple years, "when to tell someone you have MS". It was very easy for me to let my family and close friends know, what gets hard for me are the not so close friends and anyone at work.

At this time I have not told anyone I work with about my MS, I think for fear they would think less of me and my abilities. I have the advantage now that I am not experiencing any outward MS symptoms, so I feel I can keep it to myself if I want.

One thing I have noticed is depending on the experiences the person you are talking with has had with MS in their lives you can get wildly varied responses. Since MS can affect people in so many different ways it is a very hard thing to discuss if you do not have the time. Therefore, I find if I do not know the person very well and I do not have the time to really talk with them about what is happening with me as far as MS goes I do not tell them about my MS.
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Postby patientx » Thu Oct 09, 2008 9:40 am

I'd tell them the shots are heroin and offer them a hit. But then again, I've been accused of being a smart-ass...
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Postby MissDee » Thu Oct 09, 2008 10:24 am

This is my first post, though I have been reading for years.

I have had ms for 20 years, diagnosed in 2004 with benign RRMS.

No one knows except my husband and my Mom (who passed away in 2006.) I will keep this to myself for as long as I can because once you tell someone you can never take it back.

So, my advice is to be very discreet as to who you tell because like I said you can never unsay it. Oh yeah, I've been injecting C for 4 years and have managed to keep it very well hidden. Of course this is really my personal feelings and would not expect anyone else to feel the same. Good luck.
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Postby Artifishual » Thu Oct 09, 2008 12:21 pm

patientx wrote:I'd tell them the shots are heroin and offer them a hit. But then again, I've been accused of being a smart-ass...

Haha, you read my mind!!

Matt, I really don't see what the big deal is about exposing the truth about having ms. Hell it's not like we have aids or some other STD. In my honest opinion you should tell them. I don't think they will think less of you. If they do then they are worthless pieces of shit and I would wait till the were sleeping and set their tents on fire with them inside of it. So don't be afraid to tell them. Also bring matches and lighter fluids just in case. :wink: arti
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Postby freiguy » Thu Oct 09, 2008 12:24 pm

Where do you live on the East Coast? Where are you headed to hike and camp?
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Postby robbie » Thu Oct 09, 2008 1:11 pm

Never had an issue with telling my friends didn’t tell my employer until I couldn’t hide it anymore. Told the girl I was with at the time and now she’s my wife, it’s easier when people know at least when you get bad enough, as for the needle just go into the bush for a #$%^ and take it.
Had ms for 24 years now.
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Postby MattB » Thu Oct 09, 2008 6:03 pm

Thank you all for your responses!

First off, I haven't told too many people and it's not because I'm embarrassed I just feel like they may treat me different, more delicately or something if they knew. I tend to push myself way too hard, probably harder than I should if I had MS and people seem to respect me for that and I don't know if telling them would change that. I've been hiking before with these particular people so they know it is something that does not hold me back. One of the girls has hypoglycaemia and she came right out with it and no one winked an eye other than to make sure we had ample sugar for her in case she needed it. The only people I've actually told myself are my mother, one of my grandmothers, my ex girlfriend, and my best friend. Other people know but only through word of mouth(I never told anyone not to tell, I just expect them to use discretion and they have). I've been like MissDee in that I just don't feel the need to tell anyone usually but personally I don't see the harm. I guess it's some kind of twisted pride.

I consider myself extremely lucky in that I don't have any outward signs of MS and the only sign I can always tell is the damage from my ON. Other than that I do sometimes get tired and I am somewhat more forgetful(tip of the tongue thing) than normal.

All considered I think I will tell at least one person but I am, at times, very awkward when it comes to things like this. I guess I'll have to hope they ask if anyone has asthma or something.

freiguy. I'm from Pennsylvania and I'm heading to the Adirondacks to hike Mt. Algonquin and possibly Mt. Marcy starting at avalanche pass. See, that's what I'm talking about pushing myself too hard :oops:
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Postby MrsGeorge » Fri Oct 10, 2008 2:50 am

my closest friends all found out when I was dx - and I haven't been able to hide it because of my symptoms. None of them treat me any differently.

Even if you don't want to tell everyone it might be a plan to tell one close friend sdo that someone knows.

I hope you have a great time.
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