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    When did you start telling friends you have MS

    Hi all!

    Last Thursday I was diagnosed with MS and have really kept this quiet with the only family and a couple of friends telling them. I know alot of my friends can see a change in me because I don't attend some of the activities I used to on account I just don't feel good and the fatigue knocks my socks off. I feel some need to know but not sure how they will react and I don't want them to feel sorry for me. I don't even know if this makes sense.

    I've held so much in it's making alot of anxiety for me and I'm finding since the diagnosis I'm taking more anxiety medication. I'm doing the best I can to accept it but the last week I've had many ups and downs and my stomach feels in knots most of the time. I don't feel comfortable but I know a support system is probably a good thing and would appreciate how and when you began to tell your story.

    Sincerely.............
    Susie


    Diagnosed 6-28-14
    RRMS
    Alone we can do so little; together we can do so much. ~Helen Keller~

    #2
    As a newly diagnosed patient, it is unlikely that you haven't fully embraced the news. Try to identify what YOUR needs are and abide by them. There is never a great way to give people unexpected news. Some people may throw a dinner party for close friends and break the news all at once. I tend to be more private so I told very few people and one-on-one. Just try not to overwhelm yourself in the process. You and your health should be of paramount importance during this time.

    People are strange and their reactions to illness and ms are even stranger. Telling people indiscriminately can cause needless frustration, grief and stress. As you tell more people, you will become more adept at responding to their reactions, questions and emotions. You don't need random people calling you to offer snake-oil cures and poor advice. You don't need "friends" finding out from "acquaintances" and getting upset you did not tell them personally.

    I knew I did not want everyone to know my business, especially at work so I needed a strategy.

    I intentionally avoiding anyone that I thought
    • would react negatively and be emotionally draining
    • would gossip to others
    • cause more stress
    • would be callous
    • would cause problems at work or otherwise


    I intentionally selected people that I thought
    • would pray for my wife and me
    • extend grace towards us
    • might be willing to help
    • had a clue about discretion
    • would be sympathetic


    Finally, remember that people will respond in their own way and not necessarily how you expect. Some of my friends "withdrew" to process the information and others circled the wagons. I found those who had endured hardships were generally better able to handle the news. I also found a new kinship with people that had chronic conditions. There's no super-secret handshake (I hope), but there is a tremendous difference between sympathy and empathy. I believe the empathy expressed here is one of the biggest draws. MSWorld people generally "get it."

    Thank you for another wonderful question that gives us all an opportunity to learn and grow. I look forward to other responses and opinions.

    Comment


      #3
      I told family and close friends right away, as I was blindsided by the diagnosis. I waited a few months until on a more even keel to tell some other friends. If someone asked why I wasn't up for usual outings, I just said I wasn't feeling well and was having some tests done.

      At work, I read cautious. I did let people know, but only those whom I knew would keep it quiet and not speed it around.

      Both personally and professionally, once it is out there, you can't get it back. I think Marco said it and it was adviser I was given: ask why do I want this person to know? In the end, there were surprises both ways. Some people were there that I never expected and others disappeared who I thought were there for the long haul.

      The nmss has some great pamphlets on this. I would definitely take a look.

      Good luck to you...its a really emotional time right now for you.
      Kathy
      DX 01/06, currently on Tysabri

      Comment


        #4
        Marco gives excellent advice.

        I told my partner first and then a few close friends. Those were the only people I told for a long time. I have still not told anyone in my family of origin (I'm 50, if that matters), or anyone at work. I'm going on 8 years.

        I would say tell only the few people you need to tell now or those you feel need to know (to support you, etc.). You can always tell people later -- you will have the rest of your life to do so. You will be less traumatized and more clear-headed about things after you've had this diagnosis for a year or so (I know I was).

        Maybe in my second year of being diagnosed, I shared my news with a good friend whose sister had also recently been diagnosed. He went on to spread it to one person in our extended circle -- someone I would not have told on my own. I made the mistake of not explicitly saying "please don't share this."

        I never made that mistake again. Don't worry about offending people. If you want them to keep something private, spell it out.

        Good luck.

        Comment


          #5
          Where I live, small town, there's no keeping anything too quiet. "Whose car was parked outside your place on Friday?" when you pick up a loaf of bread from a shop. That level of surveillance.

          I wrote a "having MS sucks" type article for the newspaper where I work.
          But lots of people don't know, and at this late stage in the game, I really couldn't be bothered to tell them. Also, they obviously didn't buy the paper, so bad luck, I'm not going through the details again.

          What I have found is people have a remarkable lack of general knowledge about what MS actually is.

          Some of them seem to think it's maybe like some form of cancer, that it "gets better" or that I'll be dead any minute. Reactions are varied.

          If you tell people, many will disappear, but many will offer to help. Even if it's just carrying your groceries, or collecting your mail, or getting two coffees instead of one, or making sure you have somewhere to sit.

          Comment


            #6
            Going on 4 years and I have only told some of my family. None of my friends.

            Comment


              #7
              My parents, sister, husband and best friend of 30 plus years were initially all I told. A few key military people were informed as well since I was Active Duty.

              I met a Military Medical Evaluation Board and was retained by the military with no restrictions. But it was kept close-hold...and I was not rocking the boat.

              Once I retired from the Military, I got a Civil Service Position and again I told no one I had MS. I was able to keep that job for 3 years before I just threw in the towel and went into permanent retirement.

              At that point and about 10 years into the diagnosis...I told everyone. My husband and I divorced mainly because of MS. I did not lose any friends after disclosure and none of them say the things that have been said to some on this board. But of course my friends know me well enough that if they said anything ugly about my MS...Katie would cancel their birth certificate!

              My friends are nothing but kind when it comes to my diagnosis. But I have done a very good job in educating them on the disease.

              With all that said...if you are still in in the workforce, it would be wise for you to do as little disclosure as possible. Someone already stated this, but once you start putting it out there...no taking it back.
              Katie
              "Yep, I have MS, and it does have Me!"
              "My MS is a Journey for One."
              Dx: 1999 DMDS: Avonex, Copaxone, Rebif, currently on Tysabri

              Comment


                #8
                because I was in limbo for seven years, most everyone was telling me that it looked like MS. So when I finally got a 100% positive diagnosis, I did not keep it a secret from anyone.

                And because my employer was a cousin, I could not keep it a secret there either.

                And because I was open with the news I did not have to try to remember whom I told and whom I did not (that made it quite a bit easier for me).
                hunterd/HuntOP/Dave
                volunteer
                MS World
                hunterd@msworld.org
                PPMS DX 2001

                "ADAPT AND OVERCOME" - MY COUSIN

                Comment


                  #9
                  "But of course my friends know me well enough that if they said anything ugly about my MS...Katie would cancel their birth certificate! "

                  LOL!
                  hunterd/HuntOP/Dave
                  volunteer
                  MS World
                  hunterd@msworld.org
                  PPMS DX 2001

                  "ADAPT AND OVERCOME" - MY COUSIN

                  Comment


                    #10
                    Thank you for some very good advice. I appreciate all of you very much.

                    Susie


                    Diagnosed 6-28-14
                    RRMS
                    Alone we can do so little; together we can do so much. ~Helen Keller~

                    Comment

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