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......
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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With very doc appt I wonder who has come into the office.
He keeps telling me so and so's brothers wifes sister has ms...now 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
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.
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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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.
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.
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
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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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