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Adult diagnosed TS

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  • Adult diagnosed TS

    Ok, this question is mainly for anyone who was diagnosed with TS in a later stage of life (after your teens or 20's). My question is this, For anyone who was diagnosed with TS later in there life, what did you internally feel for the years not diagnosed when you had these tics, or odd things you always did? Also, was there anyone who thought you might have a disorder or something or did everyone assume you were doing these things intentionally?

    I was diagnosed around the age of 6 so my whole life I have sorta had an answer to why I twitch or cough uncontrollably. I am just wonder what not being diagnosed and being told "STOP IT", from maybe a parent or teacher had as an affect on you. I mean, if someone told me to stop twitching now, I would sorta laugh because I know I cant and Im not gonna try but I have known of my TS for many years now. But to not have an exscuse fo doing anyhting would seem like a horrible thing. Im just wondering though.
    The other day at a local grocery store, I saw a rack with books on it and one of them said, "pregancy for dummies"............

  • #2
    Adult diagnosed TS

    Well, I started clearing my throat and coughing when around five or six, and eye blinking when seven. I remember my mother constantly telling me to stop these things, calling them awful nervous habits. I'd try stopping to please her, but couldn't. Meaning that I was constantly criticized for something I couldn't stop.

    Another thing I've always had to do (I don't know if it's a tic or an autistic stim, it's not possible to know) is to sort of pinch my neck. One of my daughters would imitate me and mock me, to show me how stupid it looked, so I would stop. I tried awfully hard to stop, and succeeded once for a month. By the end of the month I felt like going insane, because I needed to do that. But I felt like I was a failure with no self control at all if I started again. Eventually I had to give into doing it again and hated myself for it.

    My son used to yell at me for repeating things he said, telling me that he just said that, and now I was trying to make it look like it was my idea. I had no answer for him, because I didn't know why I had to repeat what he said.

    My husband used to get mad at me for repeating things I say several times, and again, I couldn't tell him why I needed to do that, because I didn't know myself.

    When I needed to do obvious tics I used to suppress them for hours, and then would spend one or two hours in the bathroom, letting out the tics. I thought I might be insane, and didn't want people to know.

    Finding out about Tourette Syndrome (at the age of 50) was a great relief and finally explained all those things. I told my son why I repeat things and explained to everybody what tics are, and that I don't want to do them but have no choice. Now they ignore them most of the time. Even though sometimes they'll still tell me to 'stop it', especially when I fidget in church, because I am an embarrasment to them, I guess. Just the other day my 19-year-old daughter got mad at me for clearing my throat several times while she was on the phone. She still doesn't understand that it is a tic and that it isn't voluntary.

    I still feel embarrassed about my tics, even at home, because of the persecution I've had all my life. For the most part I let them out, though, and won't hide in the bathroom any more. It's time my family learns to live with it, it's too stressful to suppress tics at home, too. I should be able to relax at home and not having to worry about it.
    German citizen, married to a Canadian for 28 years, four daughters, one son, eight grandchildren (and one on the way).

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    • #3
      Adult diagnosed TS

      It's a great subject for discussion, because having experienced as Uschi has, the complaints and insults from family and others during the "undiagnosed" years is why I want to help others recognize TS for what it is.

      In childhood, my parents would constantly tell me to "stop it" and I would try, and especially in the early years, it was nearly impossible.

      My parents were not well informed because the resources were not available in the forties and fifties, and physicians were equally ill informed.

      I was called names like "blinky" or "grumpy" because of the grunts and eye tics.

      Teachers would send me out of class, to the principal for punishment and was even ridiculed by teachers while being made to stand in front of the class.

      I have heard similar stories from others in my age group at support meetings, which is probably why some of us resorted to re direction and suppression of tics to survive.

      As we all know, suppression and re-direction is a temporary measure, and requires relief from the tension at some point...so a visit to a private space to release the tics is required.

      At times. I, like Uschi thought it was some kind of mental illness, which itself carried a stigma, so it became a deep dark secret.

      Learning about TS and what it was resulted in a great sense of relief, though it took me over a year to be able to discuss it with anyone.

      The short answer is that it was my deepest, darkest secret and a subject I was unable to discuss with anyone because I thought I was the only one in the world doing these things.
      Steve

      Dum spiro spero....While I breathe, I hope

      Tourette Canada Homepage
      If you enjoy the TC Forum, please consider a Tourette Canada membership
      Please visit our sister Forum: Psychlinks Psychology and Mental Health Support Forum

      Comment


      • #4
        Adult diagnosed TS

        Originally posted by Steve
        The short answer is that it was my deepest, darkest secret and a subject I was unable to discuss with anyone because I thought I was the only one in the world doing these things.
        Right, that's exactly how I felt, too.
        German citizen, married to a Canadian for 28 years, four daughters, one son, eight grandchildren (and one on the way).

        Comment


        • #5
          Adult diagnosed TS

          This sense of isolation finally terminated after reading the literature sent to me by TSFC. I heard a public service announcement on the radio, read by William Shatner (Captain Kirk- - ex Montrealer) who described me in his summary of TS.

          I remember that day as though it was yesterday, when I sat stunned in my car for several hours trying to absorb what I had just learned about myself on the car radio.

          With the help and support of friends and family and eventually with the newly formed Montreal Chapter of TSFC, I learned I was not the only one in the world with the disorder that is called TS.

          My outlook on life changed considerably, for the better after that esperience...I never looked back.
          Steve

          Dum spiro spero....While I breathe, I hope

          Tourette Canada Homepage
          If you enjoy the TC Forum, please consider a Tourette Canada membership
          Please visit our sister Forum: Psychlinks Psychology and Mental Health Support Forum

          Comment


          • #6
            Adult diagnosed TS

            My diagnosis came from my son's. I grew up with odd things I did but because they were mild they were described by me as my "habits" and not really noticed by my family...I was one of 6 kids so my house was pretty busy and I'm sure we all had something going on but there was no awareness especially in my household about TS.

            I had many episodes of melt downs and cried so much my older sisters used to pin me down and take pics of me when I was crying...thinking they were funny and wanting to be able to remind me when I grew up...can I tell you how guilty they felt when they realized why I cried so much! They still apologize! I was big on picking at my skin and if I got a pimple, I would pick it till it was huge...my sisters would constantly tell me to stop but I couldn't! Luckily I did not get scared from these "picking"... just a little scared from the ridicule!

            As for work prior to diagnosis it was the lack of impulse control and the other ADHD symptoms plus the OCD that interferred with me. I have been in a leadership role for the majority of my adult life having as many as 90 staff directly reporting to me...I constantly got feedback that I was not an active listener...that I said things that were blunt and often hurtful as if I didn't care how it impacted people...reality was I did not have the self awareness to see how I impacted the people on my team...Huge eye opener. I would spend so much time after getting feedback or being told off by a peer thinking and over analyzing what I said and trying to figure out why I was like that...like you all know, it was never intentional. I found myself always apologizing and telling people it wasn't intended that way. Some understood and some over the years quit my team!

            Hindsight is 20/20 and it was another huge eye opener to discover just how much I impacted people. Fortunately I have been successful from the business side of my career and my OCD made me a perfectionist over everything I did... The people development was my downside. Well, since diagnosis and with educating myself on TS and with lots of quality "leadership" training my company has provided me...I have not had to apologize for saying something that I blurt out and I did not intend in the past 2 years. Whew! My team is solid now and turnover has been reduced. My direct supervisors even take advantage of my OCD and will often suggest I head up things that fall into the non-negotiabes areas, such as auditing, etc. I tell everyone I hire that I have TS and have found awareness can benefit everyone involved.

            Like Steve, I firmly encourage awareness and want people to understand what TS is and how all the various aspects of TS impact us daily... it's not just the tics. Early diagnosis is so important no matter how mild the symptoms...when it has a name, you can deal with it.

            I do often wonder how many of my siblings have TS, they would never admit it! I did get one of my sisters to admit to several things she does and to admit she thought she has a "little TS"...I wonder if that's like being a "little bit pregnant" :? :D
            Janet

            TSFC Homepage

            Comment


            • #7
              Adult diagnosed TS

              Janet, it's interesting to read you describing the behavioural side of TS. My biggest problem still is, that my family refuses to believe that TS is not just tics. They are willing to overlook them, but will still expect me to be like them otherwise. With being autistic on top of TS, that is obviously impossible, and the pressure will sometimes lead to meltdowns.

              Another thing is, that the Tourette Clinic at Western General in Toronto will diagnose adults with TS, but won't follow up with them. So, they diagnose you and abandon you afterwards. Since medication wasn't recommended for me, since my tics aren't severe enough to interfere with normal living, there is no good reason to find a specialist. What would he/she do? I wished there were just counselors who would educate the family of people diagnosed with TS as an adult, to help them understand.

              Of course, there are books and brochures. But my husband refuses to read them, and my kids aren't interested, either. They have 'better' things to do than finding out about why I am 'so weird'. In other words, they don't care about understanding me at all. They make it clear that they liked it better when I 'pretended to be normal', and didn't try to get them to understand why I am the way I am.

              And that goes for both the TS and AS, and for the fibromyalgia as well. NOBODY in my family (my husband and five children, four of whom are 20 and over, only the youngest is just 13) is interested to find out how they can be more supportive of me. When they criticize me for something, and I try to explain why I can't help it, they accuse me of wanting to use my diagnoses as an excuse to be unacceptable.

              Plus, my husband is a religious fanatic, and expects me to be that 'perfect Christian woman' from the bible, who I can never be. He's been trying to change me into that fictional character for 26 years. As a result I am terribly depressed right now, and very tired of living.

              Anyway, I better go.
              German citizen, married to a Canadian for 28 years, four daughters, one son, eight grandchildren (and one on the way).

              Comment


              • #8
                Adult diagnosed TS

                This is intresting to me. I was just wondering because again I have known my whole life so if you count out kids at school (at a young age) making fun of me (well, they made fun of everyone), most people have been understanding once I explain to them my situation. But I have had 16 years to practice ways to say this to people. And I have always heard about people going a long time with TS but not being diagnosed and getting made fun of or (like you guys said your family would say) stop it!, and I always wondered what thses people would think or say when they were told these things. I mean, the person ticing doesnt even know why they were doing it so it must be a confusing time. I also sorta feel bad for some of you having to go through that. I have always had people to turn to. I do commend your guys strength to hold on and discover the truth AND to accept who you are. I too have encountered the "no knowledge" of TS in this world and it is frustrating to be somewhere and trying to explain yourself but no one seems to understand but that again is nothing to what some of you have encountered.
                The other day at a local grocery store, I saw a rack with books on it and one of them said, "pregancy for dummies"............

                Comment


                • #9
                  Adult diagnosed TS

                  Uschi,

                  It is not easy when the people closest to you are unable to understand your situation. Mental disorders are still considered a taboo subject by so many, so they will try coping by denying to themselves their loved one might be afflicted with a mental disorder. It's unlikely family members are motivated by malice, but more likely by some strong influence that that prompts them to deny your condition.

                  Have you been in contact with any of the TS support groups in the Toronto area? (905) 509-4097. Your experience and ability to articulate so well would be a great benefit to TSFC and perhaps you might care to form a local support group in the Simcoe area.

                  If the idea of forming a support group interests you, we can discuss some how to ideas here.

                  There are people interested in helping and some of them are at the TSFC National Office at (800) 361-3120.

                  You have friends here in our online community who care about you. Your contributions and insights to the Forum are a valuable asset, so when you might be feeling low, come visit us here and feel free to ventilate.

                  May I suggest too that when you are feeling low, you might do something nice for yourself, like have your hair done, or call a friend to go out to a special place you both enjoy.

                  In addition, Uschi, if you feel in distress, please call the Toronto Distress Center at (416) 408-HELP 408-4357 or the Mental Health Crisis Line at (866) 996-0991

                  Click Here for the locations of the CMHA in Ontario, including one in Barrie, if you require additional resources

                  Let us know how you are making out.

                  Warm regards.....Tcheuss
                  Steve

                  Dum spiro spero....While I breathe, I hope

                  Tourette Canada Homepage
                  If you enjoy the TC Forum, please consider a Tourette Canada membership
                  Please visit our sister Forum: Psychlinks Psychology and Mental Health Support Forum

                  Comment


                  • #10
                    Adult diagnosed TS

                    Adam,

                    It's been an inspiration to me to meet families who support their child(ren) who might be afflicted with TS. In most cases the child is able to explain to strangers what TS is and to gain the support of their new acquaintances.

                    Would you share the explanation you might give when you arrive at a place where you are meeting a small group of people the first time?
                    Steve

                    Dum spiro spero....While I breathe, I hope

                    Tourette Canada Homepage
                    If you enjoy the TC Forum, please consider a Tourette Canada membership
                    Please visit our sister Forum: Psychlinks Psychology and Mental Health Support Forum

                    Comment


                    • #11
                      Adult diagnosed TS

                      Uschi,

                      I would suggest you get in contact with someone in your area as Steve suggested to get support. Perhaps coffee with someone who has similar experiences might make a world of difference.

                      My husband, like many husbands who are "normal" (which in my house just means you don't have TS ), would not and still has not read anything on TS... he does support us (my 2 TS boys and me) but doesn't understand...and not willing to take the time to educate himself. So I've surrounded him with exposure to TS through socializing with others with TS or with Mom's with TS kids...all of whom I met through getting in contact with TSFC locally. The topics of conversation usually end up addressing some aspect of TS...rarely the tics.

                      I jokingly remind Moms that it is the "y-chromosome" that makes them like that. when have you ever heard of a woman or a Mom not wanting to read up on it?

                      Like Steve suggested, if you're feeling frustrated, please use us to vent to!
                      Janet

                      TSFC Homepage

                      Comment


                      • #12
                        Adult diagnosed TS

                        Steve,

                        Well, if I am going to a place where I am going to be introduced to new people who are not aware of my TS, this is a typical encounter. First off, I dont actually bring it up. I never come right out and say, "hey, I have tourettes!". To me it seems like if that is the first thing you say to someone who you meet for the first time you are probably wanting sympathy or something.

                        But during the time around these "new" people, on a number of occasions someone has noticed why I twitch. I usually get a person to say something like, "yea, I have noticed you twitching for a while but didnt think to ask". But basically when I meet these people and someone inquires about my twitching, I will come out than and just say that I have touretees syndrome. Than after they give me the face of "oh, ok, .........ahhhh, whats tourettes syndrome?".

                        I than explain to them what it is. Now that can differ from time to time. Sometimes I just explain what it is, sometimes I refer to it as the "swearing" disorder but I ALWAYS quickly mention that swearing is not a typical tic or thats all what TS is. It just helps them get an idea. Due to the fact that I know some science behind TS and that I talk and talk and talk and talk, if the person wants to know more, I usually indulge them with info.

                        But I will say that this is what I do most of the time. There have been a number of instinces where I was nervous or scared to admit to my TS in front of someone. I tend to do this in front of someone I want to impress. As open as I sound about my TS, I definately have my times where Im, and I hate to say this, embarresed about my TS. But I hope that the fear will go away as I grow older and become even more experienced on how to handle my social situations. Again, I am very talkative, and I am never alone if I can help it so I am always in a position to meet new people and which also means open to show my TS tics. But I have come to learn that everyone has something they are not proud of or whatever and most people seem to be understanding, in my opinion.
                        The other day at a local grocery store, I saw a rack with books on it and one of them said, "pregancy for dummies"............

                        Comment


                        • #13
                          Adult diagnosed TS

                          There have been a number of instinces where I was nervous or scared to admit to my TS in front of someone. I tend to do this in front of someone I want to impress. As open as I sound about my TS, I definately have my times where Im, and I hate to say this, embarresed about my TS. But I hope that the fear will go away as I grow older and become even more experienced on how to handle my social situations
                          You know Adam this fear is very normal especially in the situations you mentioned ie in front of people you want to impress. Quite often I would hesitate in discussing TS openly in front of people like my supervisors because I would feel vulnerable in those situations. I will share with you that as I told one person at a time I moved to a point that I became more comfortable sharing with a group. Initially I used to start sharing through introducing the topic of TS talking about my kids...I'm over that crutch now and when I talk about TS now I start with the fact that I have TS and so do my boys.

                          I guess what I am saying is that as you move through life's experiences it's normal to feel anxiety when in front of new people or when you feel outside your comfort zone... Remember, practise makes perfect and when in front of the people you want to impress, they will have no trouble being impressed by someone like you because you have so much knowledge about your disorder.

                          Happy sharing!
                          Janet

                          TSFC Homepage

                          Comment


                          • #14
                            Adult diagnosed TS

                            Janet,

                            As I get older I see what your saying and totally agree. people are impressed with that kind of courage to say, this si me and Im gonna make the best of it so take it or leave it. I alos have found that if anyone judges you on this type of thing, they may have something they are hiding and the way to hide it is exspose you. I think as time goes on, people will eventually evolve into caring and understanding people but it takes time. And because TS is sorta new (the diagnosis of it at least), it too will take time.
                            The other day at a local grocery store, I saw a rack with books on it and one of them said, "pregancy for dummies"............

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