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I'm struggling with telling ppl or not telling ppl about my recent diagnoisis

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    I'm struggling with telling ppl or not telling ppl about my recent diagnoisis



    Hi I am recently diagnosed & although I feel like my life has had an atomic bomb dropped on it I am trying really hard not to make a big deal out of it.

    I struggle with telling family and friends when they politely ask me "how are you doing?". 9 times out of 10 they really don't want to know.

    Most of my family is dead. what little family I have left lives in other states so its just me and my husband. (and my in laws...)

    I know that the shock of the diagnosis will wear off and I really don't want anyone's pitty. I am too independent for that.

    I guess what I am getting at is I have to let it out but I don't really know how.

    #2
    Hi Kitterkat,

    So sorry about your recent diagnosis. I understand what a blow it is; I was diagnosed last year in August and share your feelings.

    Have you considered seeing a therapist? I have very supportive family and friends, but didn't want to overly burden them with my being so overwhelmed, and found a therapist very, very helpful in giving me an outlet for those feelings.

    I hope you're able to find a way to deal with your struggles. I might also suggest trying out the chat room here; it's full of very supportive people who can understand exactly what you're going through. I have also found IT to be incredibly helpful, so so helpful!

    Good luck to you,
    Kim

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      #3
      If it's early on, you can get away with keeping it quiet. Flares can just equal "bad flu", if you like.
      Most non-MSers are 'have to see it to notice'
      If it gets bad, and it's visible, you can't hide it.

      I was amazed at the number of people who said, "I didn't know you had MS" after I explained, patiently, why I was lurching about.

      Since becoming visibly disabled, people have been much more helpful and oddly enough, less inclined to ask stupid questions.

      You can avoid pity, a little, by putting a very brave face on it. If it's too early for that, let it be until you're ready.

      Comment


        #4
        You have the rest of your life to tell people, you don't need to tell everyone right now.

        I think at first, we are so traumatized and knocked off balance that we want people to know why. But I would suggest that you wait and decide on a case-by-case basis in a more reasoned way.

        Of course you'll want to tell those you're closest to and your doctors and any other health professionals you see (therapists, PTs, etc.). But, for instance, my work colleagues don't know, and most of my family doesn't know, and my in-laws don't know. The time will come when I won't be able to hide it, but that time is not now, and I prefer being treated as everyone else is. I do have some limitations, but seriously by middle age, who doesn't?

        I have several friends who have MS and quite a number of them regret "blurting it out" to everyone (including parents, bosses, etc.) that first year.

        Comment


          #5
          When I was first diagnosed only my family and my closest friends knew. Then I met hubs and I told him right away (b/c I didn't want to deal with dating and him running away if he was so inclined).

          For the first 7 years after I was diagnosed that worked fine, but earlier this year when I started to have some serous balance issues I had to tell some of the bosses at my job, only because of the nature of the what I do.

          I would give yourself a good couple of weeks to get used to the diagnosis before you tell anyone.

          Comment


            #6
            When I was diagnosed I told only a hand full of people. A close friend and immediate family. I had to tell my job not to far after becasue I came down with TN and was out for a week getting use to the tegretol.. I had every side affect listed. Only two to three people know at work. One is my assistant so he knows when he has to take over for me.
            limbo land for 1 year and 4 months DX February 2012 Copaxon February 2012 for 6 months. No DMD's since.

            Comment


              #7
              I was diagnosed less than a year ago im still pretty young im only 18. I feel as if i go through the same thing every day. The only people that know what im going through are my parents,my girlfriend,and my best friend. Any other person who knows is just because of a need to know basis for my sports.

              Even though i want people to know what i have i am in many ways scared to tell any one. As of now i find it best to just keep it to myself even though i wish some of my friends could know and support me.

              No matter who knows what you have or go through you always have yourself. Your the only one who truely knows your limitations and feelings and struggles. Never look down on yourself your a special person just like we all are.

              Also my ms world seems to be a great outlet. ive only just started and all the people ive experienced have had nothing but great things to say

              Best of luck! STAY STRONG!

              Comment


                #8
                I think if it not visable, keep it to yourself and "need to know" people.
                When I got worse, and noticible, it depended on the person asking, as far as how much information I give.

                Close family and friends were told exactly what was going on. You will know who really cares.
                Acquaintances and distant family are told "I'm getting along ok" with no further details.

                You don't owe ayone an explanation, except if it affects your work. Most "normal" people have no clue to what we deal with.

                Comment


                  #9
                  The only people I told where my close friends (who saw me when I was disabled) and work place.

                  I think word got around because I seen on facebook someone said I had a stroke so I had to fix that.

                  I do sporting things and most people dont even know it. I might not look like it but sometimes I feel weak and I know my performance is lacking.

                  Comment


                    #10
                    Finally facing it...

                    I am diagnosed as "probable Ms" and kept the news to myself until I developed an obvious left side tremor. Denial is no longer an option.

                    I recently have taken a different tactic. I now explain openly I have a neurological condition and that my tremor acts as my "emotion barometer". The happier I get OR the more emotional I get the tremor worsens....so I carry no secrets.

                    OR, I say, I used to ride a Harley and enjoyed the rumbling idle and vibration of my motorcycle... One day I got off, and the vibration just continued....so I sold my bike.

                    OR, I tell my grandchildren who says my hugging now includes the shakes, I tell them I figured out how to give them a massage and back rub at the same time.

                    I know my circumstances are different from those who face the change in their health and need to adapt in employment and social settings. It has taken me a year to absorb and process the abrupt change of the course of my life.

                    I now am facing this head on, and find people feel more comfortable once I disclose "the elephant walking around in the room".

                    Good luck to you, hope you find your own way to adapt, absorb, and accept.

                    Comment


                      #11
                      good one

                      hey new normal

                      i like your sense of humour. that's cool. i might try telling people that i'm method acting for a role in a silent art film, playing a blender. inspired by you.

                      hey kitterkat

                      oh man it's a huge blow isn't it! you will get there though and it is your story so you tell it when you think it's a good idea, when you need to tell it.

                      and if you ever feel like ranting and are between counsellors appointments or in one of those jams where you don't feel comfortable loading on the people around you for whatever reason that particular day, rant here if you like.

                      i.e. there's always someone to talk to if you would like to, and you will be heard and understood.
                      ---------
                      Wishing everyone luck and as many good days as possible.

                      Comment


                        #12
                        I don't have a diagnosis yet, but I was forced to tell my boss as I have visible tremors at times, occasionally lurch into the wall or other objects, and break into a sickening sweat and tremors if it is even remotely too warm. I needed to back my hours down from my already low 31 to at least a couple days off a month because of terrible fatigue. I didn't tell anyone for a long time what I was going through before I left another rather toxic job, partly because I was in denial, and partly because I really didn't feel like it was anyone's business, however the more symptoms I have the more difficult I find on keeping it to myself.

                        Newnormal, I also find the tremors as an emotional barometer..a bad scare, or getting upset will trigger them with me and they seem to last for hours. One of my biggest fears is losing my ability to draw and paint as I am an artist (for fun and sometimes $$) and this is a big source of enjoyment for me.

                        Comment


                          #13
                          Kay I think your response was really helpful, at least for me personally. I am just now at my one year since diagnosis mark, and although I have had some recent relapses, I went much the path you described. To this day, only my immediate family members, husband, and a couple of best friends know about my diagnosis.

                          As I am employed full time, my FMLA paperwork is filed but my supervisors and coworkers have no knowledge of what this contains or why. I took the approach that I don't want this disease to be my whole life, so I am slowly accepting what it has added to my life and being selective about how and when to share that with others. I definitely did the "smart" legal things to project my job, my insurance, etc., but I still operate on a relatively need to know basis.

                          That being said, it has been a year and I am at the point now where I am challenging myself to be a little bit more open. it's funny, but I kind of feel like someone who is "coming out" to their community for the first time...I find myself experimenting with the words. For example, do I say "MS" or "multiple sclerosis?" Will people know what those even mean? Do I have to use the acronym - sometimes that feels a little TOO familiar.

                          The other day, I went into a new running store to buy some good walking shoes. I don't know why, but I told the man there that I had MS. He was of course accepting and supportive - but he did also want to sell me the shoes of course! I think it helps me sometimes to be open with a complete stranger, like it is some sort of practice for the "Real thing" of telling someone I care about. It's a little irrational I know, but I think I have a hard time telling people not because of their reactions, but because it gets harder and harder for me to pretend that MS is not a big part of my life.

                          I am sure the answer to this question is different for everyone, and I am by no means an expert, a salesperson, or anyone else who would try to convince you to move forward with telling people in a certain way. Just know that it is okay to take your time, I think, to do it your way. We may not have control over a lot with our disease, but there are some things that we can feel like we have some power over - for me, it was who, when, what, and how to tell


                          ** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **


                          Originally posted by Special Kay View Post
                          You have the rest of your life to tell people, you don't need to tell everyone right now.

                          I think at first, we are so traumatized and knocked off balance that we want people to know why. But I would suggest that you wait and decide on a case-by-case basis in a more reasoned way.

                          Of course you'll want to tell those you're closest to and your doctors and any other health professionals you see (therapists, PTs, etc.). But, for instance, my work colleagues don't know, and most of my family doesn't know, and my in-laws don't know. The time will come when I won't be able to hide it, but that time is not now, and I prefer being treated as everyone else is. I do have some limitations, but seriously by middle age, who doesn't?

                          I have several friends who have MS and quite a number of them regret "blurting it out" to everyone (including parents, bosses, etc.) that first year.

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