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It's getting harder and harder.

Old 04-19-2011, 08:44 PM
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Angry It's getting harder and harder.

Does anyone out there suffer from Tourette's Syndrome and it's accompanying conditions- OCD and ADD? I am female, 37 and feel very, very alone in this manner. Apparently, Tourette's is extremely rare in females- so it isn't all in my head. It's real, and it's lonely, and I have to live with it every day. It has all affected my life intensely. The only thing worse than being misunderstood is being alone as well. When I started drinking, I found I could focus more on certain things. It eased up the obsessive tendencies as well. As a child I was poked, prodded, humiliated and put on (then) experimental drugs by my parents who made a point of it to let me know I was an embarrassment to them and that they wanted to be rid of me but could not do so legally. Anyway- if anyone at all has had a similar experience, I would like to hear from you. This SUCKS because my condition is not romanticized- it's made fun of. And I have been humiliated most of my life by everyone around me. It's not a "A Beautiful Mind" or "Benny and Joon" cutesy pie Hollywood BS condition made glamorous by sleek actors. It's made fun of, acceptably- by TV, movies and other media. Tourette's is a joke for the whole world to be in on and it makes me want to die for the shame of it, and also the extreme difficulty that this neurological disorder implies on my life. I don't bark or swear compulsively, dumb f***s- nor does 90 percent of the TS population. However, I DO hurt deeply, profoundly- inside- every day.
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Old 04-19-2011, 09:35 PM
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Old 04-19-2011, 09:45 PM
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sleepie, I have worked side by side with a man that Tourettes for close to 20 years so I have seen the suffering this condition can cause. My friend credits a large reduction in his symptoms through a strong yoga practice. I don't know if it was a stress reduction or if it was improvement in his neurology. His stress level definitely has a correlation to his ticks. Being early in sobriety must make it even tougher. I am sorry you have to go through that too. Take of yourself.
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Old 04-19-2011, 09:52 PM
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I've met a couple of people with TS, but didn't know them well, definitely not enough to know the extent of any accompanying ADD or OCD. One I met through work, and she seemed pretty comfortable in her skin. The other I knew through family friends, and he struck me as very withdrawn the couple times I saw him.

I can only tell you that I don't see it as a joke, and I have infinitely more respect for someone who lives with it than someone who laughs at it. Compassion, admiration—I like to think that's what most people feel when they see someone else dealing with adversity.
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Old 04-19-2011, 10:17 PM
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I don't know Sleepie, except to say those people are ignorant. Most of us are.
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Old 04-19-2011, 10:18 PM
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Every time I try and look for anything I can relate to on this- I find only people making fun of it. Or, the most extreme cases are portrayed. The people who scream profanities or shout publicly- again, a very small portion of the TS population. Nowhere are the silent sufferers like myself. Nowhere. And I am forced to live in a world that does not, cannot understand. Can't be bothered to try. Or insult me with shallow observations if I dare impart this very personal information- if they don't brush it off entirely because their problems are so much bigger and more important. Or, try to give me a "tough love" approach to something they can NEVER fathom. Callous beyond comprehension.
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Old 04-19-2011, 10:41 PM
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Are there not sites or groups to share with on TS?
I don't know but have you looked?
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Old 04-19-2011, 11:13 PM
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Going through life with Tourettes, OCD and ADD is not fun. You could go to the Tourette's Syndrome Association (TSA) online. You will find an online community, education, as well as evidenced based treatment and research which can be very helpful. You don't have to go through this alone.
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Old 04-19-2011, 11:18 PM
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The problem with those sites is this- there are no forums. And there are no people at all who are examples of success. No writers, musicians, no scientists or anyone who's made a mark. I have nothing to hope for.
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Old 04-19-2011, 11:21 PM
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As far as evidence based research- you can medicate the symptoms and that's it. Being on a cocktail of unaffordable, synthetic brain chemicals with awful side effects is my only option, and I know from experience that the results are less than spectacular. I am trying to resign myself to the cold and hard fact that I will never be lovable or remarkable in any way. It sounds awful because it is but I have to either live this way or not live at all. I am deciding.
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Old 04-19-2011, 11:21 PM
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Re:It's getting harder and harder.

Hi...sleppie

I don’t have Tourette’s syndrome sleepie, nor does anyone from my immediate family. I do know people whose children suffer from tourette’s and other spectrum disorders like autism. These disorders are misunderstood for many reasons and can affect many people on all levels, not just the immediate family. The unfortunate part of all of this is the crude and indignant reactions of those who suffer from another uninformed condition, known as ignorance.

My parents were saints compared to yours, and tried their best to raise us without resorting to shameful practices as yours did. When they didn’t understand something, they sought out ‘good counsel’ instead, which advised them on what to do next. This was their way of saying ‘I don’t know how to handle this’ and allowed the advice of others guide them through the process of ‘remedying’ the situation despite our dysfunctions. I grew up knowing that when mistakes do happen, the benefits can outweigh the consequences if followed by patience and understanding not apathy.

Being alone and misunderstood are the awkward seeds of embarrassment and shame. They can cause us to doubt ourselves and the uncomfortable surroundings outside our own little world. These were just a few of the gnawing impediments to what could become our greatest victory; the freedom to experience the love, compassion and understanding that could break the grips of those intolerant and shameful moments that have plagued us for way too long. My prayer for anyone, especially you sleepie, is to remain close to those who can help alleviate the suffering that others caused. You were meant for so much more, with the God given talents to accomplish many things and this forum and the support of those who do care will be a reminder of how important you are to us –one day at a time.

:ghug3

~God bless~


P.S. Here is a link to a forum that may help.
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Old 04-19-2011, 11:46 PM
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My prayer for anyone, especially you sleepie, is to remain close to those who can help alleviate the suffering that others caused.
I wish so badly that I could find those people. And that if I did, that they would want me around. I have never, ever had a mentor or anyone who seemed close to me without wanting something. That leads me to believe that I am worthless. If I had any qualities worth attention- someone would have noticed. At best, someone may want me as a distraction (my girl friends of past) or maybe a quick, forgettable f***- (my male acquaintances)- but nothing substantial.
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