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My Experience, Tourette's and OCD taking a 180.


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Hi all,

Hope you're having a wonderful Friday and happy weekend! I just felt like coming on here today because I've been feeling a bit low today; I'm learning that the journey to recovery is certainly not linear and that sometimes when you think you're doing well, the little buggar comes along and tries to sneak its way back in again!

I wanted to share a little bit more about my experience as I'm still very new to the forum and only recently have I been diagnosed, so it all feels a bit alien to me and it's so comforting to know there are hundreds of others here experiencing the same thing. I was first diagnosed with mild Tourette's when I was 9, which I know is a condition that has a lot of overlap with OCD (although I am yet to come across anyone else with both!), and had lots of violent and gruesome intrusive thoughts when I was little that I can still remember in graphic detail; I didn't have any overt compulsions to try to alleviate my distress, but I spent a lot of time ruminating on them and panicking over them, trying desperately to force them out of my head. I would wear gloves to bed after my sister told me it was possible to make yourself sick if you stick your fingers down your throat, and I was scared I might get curious and try to do exactly that (emetophobe alert!). I was always an anxious child and suffered quite badly with panic attacks and low mood in my teens (I'm 21 now). In the summer of my 17th birthday was when it got really bad, and only now do I look back and think "Yep! That was OCD!". I was on holiday with my family and had seen a small child and then had the awful thought/sensation that I was about to abduct and molest her, which spiralled me into a huge fear of being a paedophile; I then did a lot of ruminating, thinking "most paedophiles are men, what if I'm trans? Or am I attracted to women, am I gay?" All classic OCD stuff. A few weeks later, I remember one day having the urge to yell "I'm gay!" to my sister, even though I wasn't sure if I was (everyone questions their sexual orientation in adolescence, I'm now most comfortable with the labels of bi/queer/fluid), and that latched on. Going on holiday to Greece with my family a year later I was overwhelmed with the urge to yell "I'm gay!" and imagined elaborate scenarios where I would do a big coming out to them, causing me a massive amount of distress. I felt like my holiday had been contaminated and ruined by my thoughts. I feared getting drunk in case I lost control and came out to everybody, so avoided alcohol for years (I'm still a bit anxious about alcohol!), as well as caffeine, worried that if I had too much energy in my body, I wouldn't be able to control my impulses. I didn't recognise any of this as OCD, because I was ill-informed about the condition and thought it was all Tourette's related stuff, but looking back now I can see that I've spent the best part of 4 years STUCK IN MY HEAD. 

Anyway, my most recent spike happened in December just passed. One night I had the urge to look up a film that had been deeply triggering to me as a child, and something I had avoided for years. Even the mention of it was cause me to flee and panic and sob, and I always feared accidentally looking it up. Anyway, one night out of the blue it just overwhelmed me and I thought "I'm just gonna type it in and see if anything comes up" so I did, and it did, and I got the MASSIVE wave of relief that I had some questions about it answered. PHEW. That night, however, more thoughts popped in, "ooh, how long is the film? Do the actors have instagrams? Who is the director?" etc etc, so did some more searching, which picked up momentum and I told myself tomorrow I'll watch the trailer. You can see where this is going.... Now we're in March and I'm still ****** stuck. What was once an avoidance behaviour has now taken a complete 180, and my compulsion has become to ACTIVELY SEEK OUT stuff that could disturb me, or look up horrible images and videos, live surgery etc etc etc, checking instagram for distressing content, I could go on and on and on. It's like my brain wants me to be exposed to this stuff, and my compulsion is to do so, which just fuels the cycle. It's like the scene in Nanny McPhee where the kids are about to catapult their little sister but they have no control over themselves and they get terribly distressed! I DO NOT WANT TO BE DOING THESE THINGS, but my brain only gets relief once I have. I feel like my anxiety is really quite bad at the moment because I am resisting the compulsions (it escalated to an awful place, I don't want to go into detail). And then I get the urge to type in other words that sound similar but are completely unrelated, but I don't know if that is an exposure or a compulsion. Right now I'm sitting with the uncertainty of that! And if I leave it alone it feels like avoidance, which is what I did for years, so you can see how I feel stuck. 

Anyway, lockdown has really got to me and every day feels like an endless cycle of waking up full of dread, going about my day feeling anxious and then relieved to go to sleep at the end of it all. I've been on 50mg sertraline for about 6 weeks now but I'm thinking of bumping up my dosage. Sorry for such a long post, but I really appreciate the support I've had so far! Just wanted somewhere to RELEASE a bit tonight, and even though there's so much more I could say about my experience, I've already said a lot! 

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Hi Estelle,

I'm sorry to hear you're going through a bad patch. I think everybody here would agree with you the road to recocery isn't linear. Learning to negotiate the dips and troughs is all part of ultimately getting to a place where OCD has no power over you. :)

As well as starting Sertraline have you been offered any CBT?

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That's a very good point! I think I'm just so desperate to speak to a professional about it all, my IAPT therapist has been very helpful but she said she might bump me up to someone more senior. She said she wouldn't be able to give me a formal or official OCD diagnosis, but she's almost certain that's what I'm struggling with as I scored 93 on the questionnaire when apparently the diagnostic criteria is 40! 

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