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Revealing your diagnoses of MS to others- Member topic for February

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    Revealing your diagnoses of MS to others- Member topic for February

    Your Member Topic for February is here!
    You made suggestions and we listened!
    Thanks to all who participated in January's Member Topic of the Month!

    ***What were the responses and reactions, either positive or negative, of others when told you had MS. Did you wait to tell others and if so, how long did you wait and why?***

    Please join us in this important conversation and share your recollections of how, when and why you revealed your diagnoses. Your thoughts and concerns on this topic are always welcomed.

    Thank you all for your participation and stay tuned for more of your suggestions in the months to come! We appreciate all your thoughtful ideas and hope to hear more from you! You can add more suggestions here: http://www.msworld.org/forum/showthr...the-Month-quot
    1st sx '89 Dx '99 w/RRMS - SP since 2010
    Administrator Message Boards/Moderator

    #2
    Originally posted by Seasha View Post

    ***What were the responses and reactions, either positive or negative, of others when told you had MS. Did you wait to tell others and if so, how long did you wait and why?***

    Please join us in this important conversation and share your recollections of how, when and why you revealed your diagnoses.
    Due to the visible/obvious deficits that I exhibited early on (and that didn't go away), the MS diagnosis was not difficult to reveal to others.

    Over the course of about a year, I developed various symptoms: a limp while walking, tripping and falling several times, unsteadiness, dropping things, loss of strength and finger dexterity, urinary frequency/urgency, eye muscle problems.

    I couldn't hide these from family, friends, and coworkers/supervisors (US Postal Service). Also, they all knew I was having tests to determine the cause of my issues and were also curious to find out what was wrong.

    There were varied reactions and responses when I revealed that I had MS. Some people knew what MS was, and there were some that I educated about the disease. Most, if not all, (that I can remember) were understanding or sympathetic. Some wanted to talk about people they knew who had MS, while some never mentioned it at all.

    I was able to continue working for 5 years after diagnosis, being assigned light duty work when I could no longer perform my original job duties. Permanent disability retirement followed that.

    Because of the visibility of my deficits, I didn't have the problem of not being believed as some people with MS do who have intermittent or invisible symptoms.

    All in all, I had no problem revealing my diagnosis of MS as it was progressive and very obvious soon after the start of symptoms. Couldn't hide it if I tried.

    Take Care
    PPMS for 26 years (dx 1998)
    ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

    Comment


      #3
      I did not try to keep it a secret from coworkers. Then one day after I had switched positions and moved intothe office ( where things were more easily handled as far as my MS goes)I fell in front of the owner and he made me start working from my wheelchair( which was a blessing in disguise). All of the responses were positive because everyone knew I had MS to begin with, a few of the guys that I used to joke around with even told me ( jokingly) they were going to put sticks in my spokes when I was not looking.
      Because of the good relationship I had with my fellow coworkers, living with my MS ( at lease in the early years) was easy.
      hunterd/HuntOP/Dave
      volunteer
      MS World
      hunterd@msworld.org
      PPMS DX 2001

      "ADAPT AND OVERCOME" - MY COUSIN

      Comment


        #4
        I had no problem revealing that I had ms. I had several sx's through the years before dx's., I even had drop foot and was wearing a brace and was having balance issues before being dx. Thankfully I had just started working with my husband so I didn't have to tell an employer. I finally had to go on disability.

        My husband and I just held each other and cried. He has been a Gods sent. A lot of family members responded with, now you know what's wrong you can get some help. Some people were sympathetic. Some people don't really know what to say.
        God Bless Us All

        Comment


          #5
          For over 30 years i have been one of those 'normal' looking MS'ers. Other than attaches , that could be dismissed as possibly something else. Limp - sore hip, numb arm- sore wrist, weakness- sore back etc. The hardest to explain away was being unable to speak for about 4 days and slurring for a couple of months. So avoided the need to speak and gave some excuse about having a headache if I noticed a 'funny look'.
          So my husband was the only one to share my journey with me.Until about 4 years ago.

          We both didn't want to worry our grandparents and parents who had health problems of their own and who all passed away between 2002 and 2011 and felt our children (very young at diagnosis) would worry as well so kept our concerns from them too.

          I told my sister after i began to progress and at a time when we were sharing mutual confidences and reconnecting (life took us down separate paths for a few years). She immediately looked worried and asked what the time line was for me. I kicked back into reassurance mode and said I'd had it since I was in my teens I'm not going to kick the bucket any time soon. And told her about my Tysabri treatments once a month.
          A few times since then she has asked 'how I'm doing'? I keep it brief with minimal info. She has never asked any specific questions regarding symptoms etc and i'm not sure she knows much about ms other than 2 of our relatives died from it. She has stopped sharing her worries with me. I kind of regret telling her now.

          One close friend surmised that I was "sick" from observation. And she has dropped me like a hot potato since we stopped working together. This didn't actually surprise me i knew she wouldn't put the effort in to maintain the friendship. Missed her, but the knowing helps with the hurt.
          Confided in one other friend who was very surprised because "i work so hard" and she knew some one in a wheel chair with ms. This is quite a good relationship still though I rarely see her because she leads a very busy life with new grandkids etc so i find i do all the maintenance.

          My children- Adults now.My husband started 'hinting' about 3 years ago that Mum was sick. Mostly to get them to think for themselves and do more around the house i think. Then one of our children fainted several times and was planning to go overseas for an extended period. I was concerned and explained quite a bit to him and persuaded him to have an MRI. I believe he shared some info with his older brother.

          I have since discussed it with our other children and they are aware on a daily basis most of what goes on, Tysabri apts , neuro etc. With the occasional exception, the knowledge they now have doesn't seem to have had much impact on the attitude with helping around the house.
          One sons wife is a carrier of cystic fibrosis and they are now worried about ms as well because they are preparing to start a family.
          In one instance a 'professional' showed a very profound change of attitude after being told I had ms and my son and his wife saw clearly how some people treat you differently when they know. So I don't believe they discuss it with anyone either. Our kids are now keeping our secrets!
          Though there are times when i appreciate no longer 'keeping secrets' and being able to speak openly, as a general rule them knowing about my diagnosis hasn't had much of an up side.

          Apologies about the long drawn out post.
          Thanks for listening and sharing.

          Comment


            #6
            This was your suggestion, Caroline and thanks! I think we've all had difference experiences and as you said, different people give you different responses to the news.

            I decided to disclose right away. People had noticed some worrying issues and weird symptoms I had. I was actually relieved to finally have a dx, so passed that along to others. I had to let my co-workers and administration know bc I had missed so much work and everyone was very understanding. Worked in a library setting and was warmed by the fact they ordered some newer books about MS for our library system.

            But, like you, some friends kept and stayed away. One of those actually asked me if it was contagious!! Sad. This was 17 years ago (w/10 years of limbo before that) and not as much was known about MS. I had to reassure a lot of people like the older generation (parents and aunts and uncles) that it wasn't a death sentence. They came from a generation that had heard horror stories. My closest peers were more understanding and became more educated alongside with me.

            One of our teenage kids totally lost it when I revealed to them years ago. Wouldn't speak to me for the longest time. Since then, she has become my biggest help!

            Helpful to hear others stories!
            1st sx '89 Dx '99 w/RRMS - SP since 2010
            Administrator Message Boards/Moderator

            Comment


              #7
              I have only partially revealed my diagnosis. Mostly, to people that I have to, like my daughters therapist. I also have problems with the muscles around my eye and didn't want people to think I was winking at them. Happily married for thirty years.

              I also told most of my siblings and they sometimes get on my nerves, trying to make everything I say or forget an MS symptom. I think they use it against me, when were having serious conversation as if I won't remember, can't commit, etc.

              I am pretty open about my fatigue, memory problems, etc. and take them very seriously. So, I right down what I need to remember, mostly details and dates, etc. so I am not happy when I get dismissed.

              My mom, who is fighting cancer and my teenagers, don't know. My teenaged girls (adopted and struggling) would forever be worried about how my MS affects them and talk about using it against me.....

              Comment


                #8
                I'm pretty open about my illness. Initially, MS presented with a bang. So there was no hiding it, although it took almost two years before we had a diagnosis to attach to "it".

                "It" started with an ambulance ride to the hospital in the middle of the night, and, at age 39, a diagnosis of "probable stroke". I was off work for about 3 months and lots of OT and PT. Just as I was beginning to go back very part time, I ended up with a 2nd flare with very different symptoms, but, it also required an ambulance ride and hospitalization.

                So, although, now, fifteen years later, I'm one of those who "looks so good", and I could probably get by without telling new acquaintances, it just seems easier to be open about my MS because everybody else has known about it forever. Also, with being on SSDI disability, and having fairly limited physical stamina, etc, those things sort of "ask" for an explanation.

                Back in the days of employment (my pre-SSDI-years), frequent flares and time off of work were reasons that I chose to reveal my dx to employers. I managed to work for about 6 years after my initial MS "bang". But, I lost 3 jobs during that time, due to MS, and was sometimes off of work for as much as 8 months at a time as I recovered from flares.

                Mostly, friends were supportive. But, I lost one long time friend, who had been a bridesmaid in my wedding. She didn't ever acknowledge that the end of the friendship was related to my illness, just said that we'd drifted apart and "the friendship was no longer a priority" to her. But, the timing of that followed my diagnosis, and she had never been comfortable with hospital settings or medical issues.
                ~ Faith
                MSWorld Volunteer -- Moderator since JUN2012
                (now a Mimibug)

                Symptoms began in JAN02
                - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
                - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
                .

                - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
                - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

                Comment


                  #9
                  It's not my lead in topic when meeting people but I don't hide it. If I stumble, mumble, forget your name or a conversation we may have had, oh well that's just me. If you know me, you know about it, co-workers, neighbors, friends and family alike. I just don't understand the stigma attached with disclosing, I am a person with MS, if it bothers you then .......bye.
                  The future depends on what you do today.- Gandhi

                  Comment


                    #10
                    Would just like to add something.

                    The doctor I had as a GP in the early years of attaches (before diagnosis) dismissed my symptoms and sent me to a psychiatrist for hypnotherapy because I was "making myself sick". Even when I raised the 'family history' of ms as a concern this was arrogantly dismissed.

                    I would love to go to his new practice and let him know how wrong he was and how unhelpful his attitude was as well.

                    It would be rare for any of us at msw to not have had an experience like this one.
                    But i just wonder if it would be as satisfying as I like to think it would.

                    He's a very well regarded doctor and i occasionally hear his current patients praising his virtues and have to bite my tongue.

                    All the best

                    Comment


                      #11
                      I have always been open about my illness. That info has resulted in humor amongst co-workers, compassion (I had one who I'm not particularly friendly with shovel in front of my car door daily ) the ability to go to a pool class during lunch, and just general acknowledgement that I'm doing my best with what I have to work with!
                      Brenda
                      Adversity gives you two choices in life: either let it make you bitter, or let it make you better! I choose the latter.

                      Comment


                        #12
                        Response to doctor..

                        Doctors make errors like this often I am sure. Some are down right arrogant and don't go the mile to check out patients' complaints, and others don't really understand enough about MS.

                        I think you would feel better if you gave him feedback. You could do it in a way maybe to not insult him by telling him that you understand he is a very good physician but not everyone understands MS including physicians and how difficult a diagnosis can be. Use it as an educational message to him. Send him a letter perhaps rather than talk to him if you can put your words down better in writing and not show that you are upset with him. Right personal on the envelope so perhaps the secretary will open it.

                        This would be my suggestion and I would do it so that in future cases this physician would not dismiss them so quickly.

                        For a long time before I got diagnosed I had now and then, when at rest, a squeezing sensation in my back chest. I was pretty sure I was not having a heart attack. After some time I asked my internist what he thought and he said sounds like a muscular contraction to him which is what I also thought and nothing serious. It was only after my diagnosis and on the Internet and not from my neurologist that I found out that this was an MS hug. But my internist really had no experience with this and would not have known what it was.

                        Originally posted by Carolinemf View Post
                        Would just like to add something.

                        The doctor I had as a GP in the early years of attaches (before diagnosis) dismissed my symptoms and sent me to a psychiatrist for hypnotherapy because I was "making myself sick". Even when I raised the 'family history' of ms as a concern this was arrogantly dismissed.

                        I would love to go to his new practice and let him know how wrong he was and how unhelpful his attitude was as well.

                        It would be rare for any of us at msw to not have had an experience like this one.
                        But i just wonder if it would be as satisfying as I like to think it would.

                        He's a very well regarded doctor and i occasionally hear his current patients praising his virtues and have to bite my tongue.

                        All the best

                        Comment


                          #13
                          Professionally: I kept it a secret as long as I could. I did not want anyone's pity, sympathy or anything else and I certainly did not want to be discriminated against. I worked in a volatile office where employees were hired/fired frequently and did not want to be included among them.

                          I ensured that my long-term disability and other benefits were protected before saying a word. When I did tell them I also asked for accommodations at the same time effectively putting them on notice that I knew my rights according to the ADA.

                          Personally: At first, I told very few people because it was difficult. I am not an emotional person and when I did tell people they often needed comforting. Seriously! They would get all upset and I would have to reassure them that things were going to be fine. This was when I could still pull off being a "normie," but those days are long gone. Now, I often tell people right up front that I have MS so they can understand why I have some quirks or issues. More times than not people know someone else who has MS and there's something we can bond with. My actual friends know that I am a MS advocate (they hear and read it all the time) so there's no need to remind them.

                          My advice is to be cautious at work, especially until you fully understand your legal rights and benefits situation. It can be advantageous to meet with a lawyer to review your employee documentation and have a game plan.

                          In your personal life, my advice is to ensure that you are comfortable with your decision. I decided to have a couple of close friends meet me individually at my home. During this meeting I explained everything, answered whatever questions they had and then asked them for help. Yup, I asked one guy if he would take me to the gym another lady if she would go with me to the grocery store, etc, etc. Not all of it worked out, but I have a grocery friend that has been taking me to the store since 2012.

                          Any chronic illness diagnosis will certainly help you weed out some of those fair-weathered friends!

                          Comment


                            #14
                            I realize this is an old thread but, it has been some time since I have been on.

                            As for telling people about my diagnosis, I have no
                            problem telling anyone at anytime. The first person I
                            told was the guy I was working for at the time I DX. At that time my MS wasn't affecting my job at all.

                            However, as time went on my job became affected. But, it was not a problem. In fact, when asked for
                            accommodations the business owner went one step beyond what I asked for. They, everyone I worked with, went out of their way to help.
                            Dx'd 4/1/11. First symptoms in 2001. Avonex 4/11, Copaxone 5/12, Tecfidera 4/13 Gilenya 4/14-10/14 Currently on no DMT's, Started Aubagio 9/21/15. Back on Avonex 10/15

                            It's hard to beat a person that never gives up.
                            Babe Ruth

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