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Topic: Tourette's Syndrome: dealing with stigma

5 posts, 0 answered
  1. SubduedBlues
    Champion Alumni
    • Community champion volunteers who are not currently active on the forums.
    • A member of beyondblue's blueVoices community
    SubduedBlues avatar
    794 posts
    8 March 2017

    From time to time I have written about Tourette's Syndrome (TS) and having to deal with the stigma associated with it.

    Last year, I joined the committee of a charitable organization that deals with TS. Now, I am giving serious consideration to approaching my employer to determine if they'd be open to including the charity in their Corporate Social Responsibility programme.

    Where many people at work are aware of my tics, twitches and uncontrollable shudders, they are not necessarily aware that I have TS. But to ask the company to support the charity ... well on one hand, I don't want to have to hide who I am anymore. On the other, I am afraid that I will be hanging a flashing neon sign above my head that says "Tourettes Guy".

    This action could very well be the biggest career limiting move of my life. But, then again, with the modern world being more receptive to those of us who are not perfect, it could be an opening to a whole new world of successes. But I know not what to do.

    Any thoughts?

  2. Gruffudd
    Champion Alumni
    • Community champion volunteers who are not currently active on the forums.
    • A member of beyondblue's blueVoices community
    Gruffudd avatar
    2243 posts
    8 March 2017 in reply to SubduedBlues

    I don't think there is an answer. So much depends on context. But some ideas...

    how does supporting Tourette's fit with what the organisation says about itself in values statements, internal policy, the people you seek to engage in the community etc?

    Where I work we have a commitment to human rights and inclusion. This has been important when talking about making changes to be more welcoming of LGBTI people.

    Another thing to look at is your HR staff, are they approachable for advice?

    Third thing, remember to do your homework, is a donation tax deductible? Will the company be acknowledged? Are there ways in which the company might benefit such as speakers or education?

    To be honest, I love all sorts of difference, it enriches life and draws out creativity. I hope this is possible for you after all.

    Rob.

  3. SubduedBlues
    Champion Alumni
    • Community champion volunteers who are not currently active on the forums.
    • A member of beyondblue's blueVoices community
    SubduedBlues avatar
    794 posts
    2 January 2018

    This past November, the TSAA had an awareness booth setup at the annual Sydney Zombie Walk. It was most successful, we met a lovely young woman who was recently diagnosed with TS during her HSC. She's not sure what her trigger event was, but it is really difficult for her at the moment; having to learn how to live life with TS and wondering if is going to be a career limiting affliction. It was nice that we were able to connect with her and help her realize there is help for people with TS (more so than just the local GP), and for her to see myself having TS and a successful career.

    After reflecting on my encounter with this young woman, I have come to the realization that it may be disingenuous of myself to have a good management career whilst trying to hide my affliction with TS. I would much rather be known as a genuine person, and I cannot do that hiding my TS. And, I think if people are ever to change their attitudes towards people who have mental (or in my case neurological) afflictions, then I can no longer hide them from view. People need to see that I am still able to function, just as good (or better) than everyone else, regardless if I am afflicted or not.

    Now, everyone at work knows that I have TS; as does everyone I connect with on LinkedIn and Facebook. I am no longer hiding; and I have made certain that I no longer can. I have become an active advocate of Tourette Syndrome Awareness (even if it could be a career limiting move). When people ask me about TS and why I chose to become an advocate, I usually include my experiences here as a Community Champion on the beyondblue forums.

    So a BIG THANKS goes to all of you on these forums, the regulars, the irregulars, the champions and blue voices people, all who have contributed to these forums... through reading your posts, dealing with my own issues and (hopefully) helping you with yours, I have learnt how to stand up in front of everyone and say: "Hi this is me. I am just like you, as you are just like me, and we are the same everyone else; and because no two people are the same, we are all different." My afflictions are still there, but instead of holding me down... they hold me up.

    Be not ashamed of who you are or what you have become, be proud that through these affliction you are able to help others survive and overcome theirs.

    Best wishes for the new year everyone.
    SB


  4. BPD fighter
    BPD fighter avatar
    1 posts
    24 November 2018
    Hi i have a question. I have had motor tics since i was in primary school. I would jerk my head constantly. Then it changed where i would blink repeatedly and move my face around and at times i would feel like i had to stretch my waist. But the vocal tics started around 19 years old i started getting throat clearing and snorting over time it got worse 22 i am now and its the same would that be tourrettes though the vocal tics werent noticed until 19 years old when i looked it up it said before 18?
  5. SubduedBlues
    Champion Alumni
    • Community champion volunteers who are not currently active on the forums.
    • A member of beyondblue's blueVoices community
    SubduedBlues avatar
    794 posts
    11 February 2019 in reply to BPD fighter

    Hi BPD Fighter

    Apologies for taking so long to respond, I have been off the forums for awhile.

    Traditional thinking, amongst many medical practitioners, is that TS is a childhood disorder. One that people outgrow and it magically disappears when you turn 18. If that is what your doctor thinks, I think it is time to get a new doctor. Adult onset TS is not an uncommon occurrence.

    Also, many people are not diagnosed until later in life because the medical profession had no idea how to diagnose TS when they were children. I myself had most every symptom and comorbid condition of TS when I was a child, but didn't get the "official" TS diagnosis until I moved to the big city as an adult.

    To find out more, visit tourette.org.au

    SB

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