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How To Have Tourette’s Part 27 – Go Easy On Yourself

tourette's syndrome lonelinessI have been getting a lot of emails about Tourette’s Syndrome from people who are being broken by it. Just as telling are the statistics I check every so often to see which keywords people are using to find my blog. They are becoming increasingly Tourette’s related.

In the past two months people have typed these terms into a search engine, and then visited my blog through the pages that resulted:

  • Tourette’s or suicide
  • I hate terets I hate myself
  • When will my Tourette’s go away?
  • Girlfriend left because of my tics
  • have Tourette’s nobody understands
  • Will tics in my son stop when he is older?
  • Be successful and have Tourette’s?
  • Tourette’s pain
  • Tourette’s injury
  • f*** Terrets

And my personal favorite, “Tourette’s Is Josh Hanagarne gay?”

To all but the last I can say to those searchers, the situation is as bad as you think, but I believe you can alter the way you think about it. I don’t say this to be sanctimonious or make light of anyone’s pain–over the past ten years I have felt (and Googled) just about every combination of the above questions and statements that exist. But I wish I hadn’t.

If you are reading this, you have Tourette’s, and you are one of the searchers who typed in anything I’ve mentioned in this post, please go easy on yourself. Let me know if I can do anything for you. I know Tourette’s can be lonely, but that only makes it worse. Find someone to reach out to. If you are comfortable doing so I’d be happy to talk with you if you think it might be helpful.

And if you ever want to write a guest post about Tourette’s for World’s Strongest Librarian I’d be happy to host you.

Josh

PS: If you’re just in the mood for some lonely thoughts, that link should fit the bill.

Comments on this entry are closed.

  • Robert Hickman October 7, 2010, 4:55 pm

    I don’t have Tourette’s, however I am an aspie.

    I am living with many of the same problems, such as reduced social acceptance. And although the causes differ from one condition to another, the root of the problem is the same. Society has been taught to regard anyone that is different as weird.

    The last thing you should do is let the problem drive you into hiding, the only way to solve the problem is to increase public awareness. The public needs to know that we are different, not weird.

    Anyone with disabilities can find success, but not through the normal methods. The internet is a boon for us as it removes most of the issues. Poor social skills, ticks and other audio/visual distractions are all hidden when the communication media is text.

    Start interacting on social networking sites, start a blog and most importantly, don’t try to hide that you have a mental disability. People have a knack for picking up anything that looks off.

  • Larissa October 7, 2010, 6:09 pm

    Thank you for being a beacon of light for those in need. 🙂

  • Teresa October 7, 2010, 7:07 pm

    Josh, you continue to impress me. I love this act of kindness, this encouraging hand you reach out with.

    Thank you!
    Hugs and butterflies,
    ~T~

  • Leni October 7, 2010, 8:14 pm

    Great post…I don’t have tourettes, but I admire and support people who try to make a difference and educate others. Thumbs up…

  • Mary October 8, 2010, 3:50 pm

    Hi Josh!
    My son has Tourettes and is doing very well right now. Tics have abated a lot, although I am still having to educate others. His new teacher doesn’t think he “tics” at school but is rather self stemming. UGH. Maybe some of the things he does are stemming but so much of what he does are tics. People who don’t understand what a tic “looks like” just don’t get it. Right now his tics are snorting and clearing his throat and she thinks it is cold related, and it isn’t. I know my child and they are tics. I know the difference. Just a bit frustrated now.
    The teacher also states that when he stresses he seems to stem(or get frustrated), well DUH doesn’t that also cause tics to increase.
    He is doing well in school right now and we are increasing his mainstream time. I could write a book, I tell you, but wouldn’t even know where to start.
    Thanks for your BLOG! It keeps me going! Oh and my son is 10!

    • Josh Hanagarne October 8, 2010, 3:55 pm

      Thanks Mary. If either of you ever need anything, please let me know.

      • Mary October 9, 2010, 11:33 am

        Thanks Josh! We are in a good place now. I just hate that each year I have to re-educate people.
        Mary

    • Ayesha March 14, 2012, 8:59 am

      Hi Mary, my daughter has just been diagnosed with Tourette’s. As you can imagine, I am looking for any and every possible hope. Is there anything you can attribute to your son’s tics abating? Any other useful information? I just feel so lost.

  • 4t5dfdfb5rtgv October 20, 2010, 12:15 am

    I have tourettes, although I haven’t been diagnosed yet.. apparently it takes 2 weeks to even get a call from a psychiatrist.
    I’m nearly 19 and have finally decided to take care of my disorder. I always felt it was an extremely private(although completely public) part of my personality, and won’t let ayone touch it. I would never let my parents take me to the doctor growing up. I’m in the real world now and have begun to realize that I have a tough life ahead of me. Highschool was easy, I’m “magnetic, popular, charismatic, and fun” but need to be myself now. I just hate how I not only have tourettes, but am a complete mess, weird beyond anyones comprehension, and just want to move to another planet. I fit in everywhere, but in doing so fit in nowhere. I’m cool and successful, but a freak at the same time. I just want to be normal but not have to change. No one is like me. I ever want to get married, but don’t want to die alone. I have no real friends. But thousands of good friends. What the hell.

    • Bradley Kirkland November 3, 2010, 10:16 pm

      i know exactly how you feel… im 20 and i know its tough man and i go through the same things you go through and understand how you feel… it sux pretty bad having those thoughts about who you are and what you have, especially when your family doesnt understand it. when i first realized i had tourettes (at 14) my mom completely denied it entirely, and now i think she understands it, but i still havent ever heard her say the word tourette.

  • 4t5dfdfb5rtgv October 20, 2010, 12:16 am

    never*

  • Bradley Kirkland November 3, 2010, 10:09 pm

    Hi, my name is Bradley, i am 20 i live in Amarillo TX,and i have tourette’s. Everything you talk about and speak of really helps and i appreciate that. Its really frustrating at times and its really cool to know that there are people out there who have it and know how i feel with tourettes. i just wish there were more people here who either have, or understand tourettes and are actually cool to talk to when i become frustrated with myself because of my disorder, because most people just think its a big joke because of how the media or television portrays it. its nice to know that there are people who understand.

  • steve February 4, 2011, 7:59 pm

    Josh, My name is Steve. I have been reading a book by Dr. Oliver Sacks titled: “The Man who Mistook His wife for a Hat, and other clinical tales”. Dr. Sacks describes for certain types of Touretter’s, there is “excitement of the emotions and the passions, a disorder of the primal, instinctual bases of behaviour, the disturbance seems to lie in the very highest parts of the ‘old brain’: the thalamus, hypothalamus, limbic system and amygdala, where the basic affective and instinctual determinants of the personality are lodged”. “Gilles de la Tourette a pupil of Charcot (also including Freud and Babinski) were among the last of their profession with a combined vision of body and soul, ‘It” and ‘I’, neurology and psychiatry”. A.R. Luria’s “Higher Cortical Functions in Man” and “The Mind of a Mnemonist” remarked in his later work, a biographical novel of his mnemonist, about a “fight between an ‘It’ and an ‘I'”. I have often felt this very same plight, as if there were two of me, one person with two “essences”. I have changed the familiar quotation to read instead: Today I have met the enemy, ‘It’ is within me and ‘I’ am within ‘It’, together we are one, but yet each remain separate identities. Is this experience of mine anything like the one you have or that others have described to you?

    Steve

    • Josh Hanagarne February 5, 2011, 3:24 pm

      Steve, I love that book, and I do agree. When I was a teenager I named my Tourette’s Misty, for “Miss T.” Even though it was kind of a joke back then, my tendency was definitely to think of it as something different from me, although it was wrapped up in my genetics. Now that I’ve got it under control again, it seems irrelevant, but at the worst, I did feel safer separating into “I” and “it.”

      • brenda April 29, 2011, 4:41 pm

        This is interesting. My daughter was diagnosed at 4, but it all started before she was 2. Anyway, when she was about 5 she said she hated her tics and wanted them to go away. Somehow it came to me asking her where the tics were. She pointed at her stomach as if to say, “they are inside of me.” She’s yelled at her stomach before “Come out!!!” 🙂 Today she was laying in the floor having a really tough time with her tics and she told me she needed to do something that isn’t even possible. She said her tics were telling her she had to move the 2 doorframes in our hall until they were touching. See? Not possible. I said sorry kidoo that would make our house fall down. She said, “But the tics are telling me and I have to!” I told her she was the boss. She said no, the tics are the boss.
        Anyway, she talks about them (oh, she’s 7 now) as if they are completely separate from her. Interesting…

    • James October 16, 2012, 3:54 am

      I have some motor and vocal tics and it has been bothering me all of my life (currently 28). I feel really depressed sometimes and lose the will to enjoy life, but to read all of your stories and seeing how you guys and gals are able to cope, really makes me feel better.

      It really sucks to have this disorder. It’s so hard sometimes because the world doesn’t understand and most non TS people just don’t get it.

      It’s super stressful dealing with tics. Not just the undesirable appearance but the strain it puts on your muscles, your emotions, everything. I feel like my muscles have had an intense workout everyday and it is exhausting! I pray that more treatments are discovered and maybe a cure one of these days.

      In the meantime, all my fellow TS comrades, stay strong and just keep your head up. Talk to friends, family, and chat with people who have the disability. It really really helps. It feels so much better when you talk about it to people who can relate. I just feel like non TS individuals can’t fully relate to how we feel.

      Love you guys and gals =).

      • Josh Hanagarne October 16, 2012, 10:51 am

        James, if you ever want to talk, let me know. I’ve been going to support group meetings again, and I agree: sometimes I just need to be around other people with TS.

  • Jordan King August 20, 2011, 3:38 am

    Josh, you are an excellent person, this morning has been unbelievably stressful for me, and seeing your kind message has helped considerably, I know how many people perceive tourettes as being funny when its being portrayed in the media but I wish people would see the bigger picture like all these people do, thanks a lot and continue to help people.

  • Michael Tucker September 29, 2011, 1:42 am

    I have tourettes and recently I think they have me. I am in constant pain and no one around me can understand the social and emotional pain of it but more importantly they don’t understand the great amount of physical pain I am in day by day. I have thought of ending of it far too many times for me to be okay with. I am so often that rock or beacon in someones life but now I need someone to be there for me and no one is. I feel dejected and hurt, it is as if I understand them yet they don’t have the slightest idea what my problems are. It is not like I am being secretive, nor am I shoving it in their faces but this is too much for me. For far too long I have been their superman and now that I need a hero no one is taking up the mantle. I am not asking for you to be that, I just need someone to talk to.

    • Josh Hanagarne September 29, 2011, 9:44 am

      Michael, I’d be happy to talk if you think it might help. I’ll send you an email.

    • 1980 October 14, 2011, 6:51 am

      Hey, i know how you feel and i feel that constant pain your body is in, also that becomes emotional pain and frustration. Not many people can understand what we go through and its a constant struggle. The physical, mental, emotional pain, its all too much and there seems to be no one to turn to. I hope i can help give my support because i need some too as i have also come too close to thoughts of ending it.

  • Junior September 30, 2011, 6:06 pm

    I can’t live with Tourette’s anymore 🙁

  • rob October 31, 2011, 1:22 pm

    I have a brother with tourettes and he’s very unhappy with his situtation. What are some of the ways he can do to decrease his tics? Thanks for this awesome blog. oh by the way he is taking neurotin now. he tried other medications but it didn’t work quite well.. thanks again.

    • Harry February 9, 2012, 11:29 am

      consume cannabinoids…..

  • Elardus March 14, 2012, 5:14 am

    Hi everyone

    I have been living with my tourette’s now for 40 years and are still amazed about the new thing I learn from it everyday as well as new symptoms. Recently I started to notice that I’m partially loosing emotions. Let me clarify I can partially feel love or sorrow but not as much as before it is strange. I noticed it last year when a close friend died and all I felt was nothing no sorrow or anything at the funeral I was a little sad because everyone else was sad but it was just because I observed their sadness. The thing that gets me the most is that I lost the love I had for my wife and children I’m still fond of them but the love feeling is gone. I’m walking around like an empty husk. I can still manage day to day tasks and handle my normal tics but this new thing scares me and trying to get a handle of it or controlling it is fruitless just like controlling tics.

  • Ayesha March 14, 2012, 9:02 am

    Josh, may God bless you for your kindness – it is a rock for so many people in need.

  • Ticcer June 20, 2012, 4:44 pm

    I’ve had Tourette’s for more than 35 years – among other things. It’s made me isolated, lonely and socially inept. It’s good to know that I’m not the only one, but that doesn’t amount to changing it. And I do want to change it.. I don’t want to be alone. But I don’t know how.

    • Josh Hanagarne June 20, 2012, 5:01 pm

      You can always come hang out with me!

    • Junior June 20, 2012, 5:57 pm

      Me too 🙂
      Let’s start a hangout group. Josh, you have my email address.