Need advice on telling others

For questions on how to support loved ones with MS.
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Need advice on telling others

Post by SlowI » Thu Jun 17, 2004 7:43 pm

I would really appreciate comments on what others have found both successful and unsuccessful in terms of telling others. I have specific "fears" about any info on this getting to my current employer before I'm ready to address that.
But I also find that my family members (older brothers and sisters) are wanting to "broadcast" the "news" to distant family and family friends, when I would rather keep this quiet.

Am I being stupid about this? I'd appreciate anything you have to say......


Post by Guest » Fri Jun 18, 2004 7:50 am


Since I was ds 5 months ago, I let a few people know about my condition outside the family. I do have some regrets about that. Some friends I have never heard from again. I assume they thought I will become a burden.

Since it is your condition, I feel your family should respect your wishes. I would also talk to someone about HIPPA. I was told that you should not tell your place of employment unless it is absolutely necessary. Even if you have to take some days off, have a doctor write a note. The note does not have to explain why or the cause.

Just a thought...


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Post by Debefree » Fri Jun 18, 2004 8:22 am

I am not out yet. I told my employer. I am in a 2 person office, so the doc visits have to be organized so I can leave. Unfortunatly my boss is telling every client that walks in the door when I am not here.

With very doc appt I wonder who has come into the office.

He keeps telling me so and so's brothers wifes sister has how does that come out in conversation over lunch???

I have told one sibling, and not my parents, as I dont want my mother to micro manage me.

I told my 2 girls (24 & 28) because they noticed my disability.

I think I know how you are afraid of negitive reactions. We have not told the inlaws..we may not "TELL" anyone. Unless I am very obvious in my disability I think I can keep it to myself.

Unless your "friends" are just interested in how it effects THEM...why tell them???

dx 04/04 RRMS
Avonex 6/04-1/06
Rebif 1/06

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Post by Xenova » Fri Jun 18, 2004 11:35 am

I had to learn not to be embarassed of my condition. I can think of many other things I have done that I am more embarrassed about. I did not go announcing it to the world but once word got out, I was glad. Now, people realize that I'm not being rude when I need to back out of plans because of the way I feel. They realize that I have good days and bad days.

I found that most people are more understanding than what I had perceived. I don't get angry at others who see me as a lesser person because I did the same thing to others before MS. That's just human nature.

If you do want to "out" yourself, make sure you are very detailed and factual on what MS is, how it effects you, and what you are doing to deal with it. Don't beg for sympathy but rather for understanding and support.


Post by Guest » Fri Jun 18, 2004 12:57 pm

I have made plans with my sister for the weekend. I am going to a huge library book sale, then to her place, then to a big mall.

I am also going to call her by 9am and let her know I if I am having the "flu". I take my shot at 5 pm tonite, and may or maynot have a reaction tomorrow morning.

She totally gets it. We may not "do" anything at the mall, except lunch if I am draging. Because I have to drive 30 miles back home after.

When you say MS, how much information can you share????

Do people really want to know???

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Post by jicepf » Tue Jun 22, 2004 8:09 am

I have trouble telling people too, for many reasons. I have not told anyone that I have dated, because I am able to hide my symptoms. I wish I knew how to tell people. Telling people about it always brings me to tears because it's hard to talk about and I am always afraid the people will reject me once they know.

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Post by seahorse » Wed Jun 30, 2004 9:29 am

I told my boss right away about my diagnosis. He was very understanding, but he isn't the kind of person who would complain about anything.

More problems I have with telling the people I don't know very good; I would't just tell them "Hey, I got MS...", since virtually all the people I told about the MS reacted quite shocked in the first line, although now they got used to it.
Now, most of the time, they don't talk about it, most don't even dare to speak the two words "multiple sclerosis". If they want to ask about my conditions, they just say "and how is THIS?" (as "you know what"). I find that somehow disturbing, but at least, they ask at all.

I haven't lost any friend just because I told them about my diagnosis, but I know some people who have. Thats really bad thing to happen...

However, I really think about whom I tell about the diagnosis. I think, I still have to learn to deal with that. Its still not easy, just one year after getting to know about my ms.

Since I don't have any visible disabilities, its still not so urgent or necessary to explain.

Wish you the best, Antje.
"Anything essential is invisible to the eye.” Antoine de Saint Exupery, The Little Prince

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Advice on telling others

Post by Alicia » Wed Jul 21, 2004 11:40 am


When I was dx with MS I really did not have to tell anyone in my family except my parents and my husbands parents. They in turn told pretty much every one else in my family.

When I was dx with MS I was not employed but did get a job about 2 yrs later. I never told anyone at my work that I had MS. I did not see the point because the MS was not affecting my work performance.

I have read some posts about lost friendships over the MS dx. If someone stops being your friend because of your MS dx you are better off out without them. How horrible! If the situation was reversed and they had MS would you ditch them? I know I wouldn't.

I would rather people not know that I have MS because it does create an akward situation. They are not sure what to say to me when I tell them and then every time I see them after that. Mostly people ask me "How are you feeling?" which I don't mind.


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Post by zpop52 » Tue Oct 19, 2004 2:25 pm

The NEWBIE has to comment on this subject.
If YOU tell the STORY, then it is yours. The more times it gets retold by different, tho, well intentioned folk. the less of YOU is in it. It is easier to keep track of those in the KNOW, if you tell your own story. Only you know your employer, and the situation. You know about secrets in a work place. There AIN'T many, so use your best informed knowledge. Good luck, it IS the BEGINNING of a new phase of LIFE for you..Have a Great Day Z
HaGrtD ZZZZZzzzzz

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Post by mscaregiver » Tue Oct 19, 2004 5:36 pm

Greetings zpop52 and welcome to the forum :-)


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Post by Melody » Sun Jul 31, 2005 12:52 pm

Hubby(41 years old) was worried at first when he was diagnosed about anyone knowing that was in Jan 2005. His sister and I sort of took over and brought him to a support group in April and they asked us all to introduce ourselves. Hubby went first and proclaimed he had no idea why we had dragged him there as he was fine and wasn't sure he had MS. It was my turn next and all I said was I'm married to the guy here in denial and I'm the one holding the paperwork that says he is fully aware he has MS. He is now helping organize our annual B-B-QUE and we have made many new friends. It's funny as once everyone knew it actually reduced his levels of stress. I understand if you have an insensitive boss as we have our own company so that was not an issue. Don't laugh but we run a Roofing Company so you can just imagine the joking hubby has to take on that. As hubby would say now "I'd rather have MS then something catching" If people appear unsupportive it usually just means they are unsure what it all is about. I doubt they are worried about you being a burden it actually probably has more to do with how well they deal with change and where they fit in. We have had so much support from friends and family. If for any reason I'm not around for the day I have no need to worry. Someone helps with his needle and cooks supper they even make sure he takes his nap as I make sure he gets a 2 hour nap as he is then able to enjoy his full day. . Sometimes you just need to learn to ask and let people know what type of support would be helpful. :lol If you listen you will note people saying things like let me know if there is anything I can do. No shame in leaning on your friends that's what made them a friend in the first place.

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Post by Bubba » Sun Jun 06, 2010 9:23 pm

My feelings are this...... Its on a NEED to know basis. If they dont need to know then I keep it to myself.
w/m 44
The problem comes with the decision of weighing the unknown with the unknown.

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Re: Need advice on telling others

Post by droopy » Thu Feb 28, 2013 12:34 pm

I've always been an, I am what I am sorta guy so I would rather people know than assume something else. My friends who have nicknamed me Mr. Burns (Old guy on the Simpsons) for 20 years may be more understanding when I tell them about MS fatigue. That said I am currently in limbo and have only got a probable diagnosis from neurologist.

I am also concerned if my previous possible, now probable dx of MS from my neurologist is confirmed by the MS clinic as to what rights I will have with my employer and their reasonable accomodation responsibilities are, here in Canada. I work in a one man store and recently realized I could nap in the back (I had to open the store although was getting the posturial headaches from my spinal tap).

This actually could be the perfect job for dealing with the fatigue I get, for years I use to nap on my lunch hours in my car at other places of employment but being a 1 man store I don't get a lunch here, so I think its fair to say to my employer if its slow I may lay down in the back.

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Re: Need advice on telling others

Post by Jimpsull » Sat Aug 03, 2013 10:58 pm

I neither hide it nor proclaim it. Exception is work. I hide it there (claim diet is about blood pressure, really more about MS). In normal life I mention it if it comes up in the normal flow of conversations. Have considered telling HR when gait issues were mistaken for intoxication (jokingly). Need to know basis seems best policy at work.

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Re: Need advice on telling others

Post by Fayruz » Sat Nov 30, 2013 1:46 pm

Maybe my approach to telling could be helpful for someone so I am writing this here...I have told my friends (some of them only recently) and I think I found the right way to tell it. I am actually quite mad at the way that MS is presented in media especially movies - it's the end of the world, no way out jada jada... I hate that because people have this image in their heads and when you tell them they look at you like you're going to collapse any minute now. So, I start with that that I have a condition that is not curable (yet) and I tell them about myelin etc, I also tell them that it's different for every patient. I try to explain them how I felt or how the symptoms feel - like somebody would put a vibrating mobile phone in my leg, like someone would strap my right arm to my body with a arm band, you can flex it but not to the full etc. And in the end I tell them the name of this thing - MS. I also emphasize that that is my experience so far and that it could change tomorrow, in the next months or never. There are just no guarantees...for any of us but I think the people with (any kind of ) diagnosis are just more aware of it.

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