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The SANE Blog

OCD: the symptoms you don’t see

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A photo of Tim from the shoulders up looking into camera calmly.

You might have seen Tim on ABC’s You Can’t Ask That sharing his experiences of Obsessive Compulsive Disorder (OCD). Here, he gives even more insight into living with OCD, the symptoms people don’t see and how acceptance gives him strength.  

As somebody who has lived with Obsessive Compulsive Disorder (OCD) for over thirty years now, I often wonder why the disorder is still so misunderstood.

We know only 1-2% of the population meet the criteria for an OCD diagnosis, yet the term is being used widely as an adjective: ‘I’m so OCD,’ or ‘that’s so OCD’. This shows many people don’t understand how serious the symptoms of OCD can be.  

My experience of OCD is that the intrusive thoughts and anxiety are constant and severe. I want to share what this can be like to challenge the idea that someone can be ‘a bit OCD’. I also hope this shows what someone with OCD might be going through in everyday life, when from the outside they might not seem to be experiencing symptoms.  

For example, activities that are part of everyday life such as shopping, work, socialising or moving into a new house involve tolerating thoughts like, ‘Do I have drugs in my mouth?’, ‘Is the sun light damaging my eyes?’ or ‘Are my clothes right/not unlucky?’  

There are permanent intrusive and distressing thoughts, then task specific ones:  

When I’m driving  

I must ensure the radio is on the right station and the volume is correct. Items within the car must be placed in the location that ‘feels right’. The speed I’m driving is obsessively monitored: ‘Did I go over the speed limit briefly? How do I know for sure?’ 

Once I make it to the shops  

There are very few things I’ll buy. Clothes and shoes are not allowed, the intrusive thoughts around, ‘Do they fit?’ or ‘How do I know they’re right?’ are too intense. The only thing I buy is food, always the same items, trying new things is too risky. 

When I’m at work 

Work is something I enjoy, particularly the routine and social aspect. The hardest thing at work is concentration. I work in a bank, and being educated and knowledgeable in finance means my role doesn’t appear too challenging.

However, the constant intrusive thoughts make it hard at times to focus.

‘Is the computer screen damaging my eyes?’, or ‘Is my system/computer arranged in the correct way?’ are two of many intrusive thoughts I experience at work. 

When I’m with friends 

Outside of work I’ve tried really hard to maintain social interests like golf and catching up with friends.

Like many people with OCD, I’m a good actor, trying not to let the internal struggle ruin my round of golf or night out.

Whilst playing golf the thoughts of, ‘Are the tees and glove the rights ones?’ or ‘Are my glasses the correct prescription?’ make things tough.  

Intrusive thoughts make any night out with friends exhausting. It also makes it difficult to engage on an emotional level. When you are managing almost constant intrusive thoughts, it’s hard to be honest when friends ask, ‘How are things with you?’  

Moving house 

Recently I moved house, which produced many new symptoms. The only property I’d ever purchased had to be sold due to distressing thoughts about ‘bad’ sun positioning and fears the sun would damage my eyes.

Just being inside the house caused distress. I had to leave a rental property after a few weeks due to the smell of paint and the thought it was ‘damaging my brain or cognitive functioning’.  

No matter how my OCD presents itself there are two key criteria. A thought and a response/compulsion.

The thought is intense and the response, whether physical, mental, or avoidant, might provide temporary relief, but only makes things worse in the long-term.

Thinking logically, for example reminding myself that the sun won’t damage my eyes unless I look at it directly, doesn’t decrease my distress. 

Despite these distressing thoughts I still manage to function in important parts of my life. I completed University, work full time, maintain friendships and enjoy time with family.

For me, the trick is to accept the thoughts are out of my control.

What I can control however is how I respond to the thoughts. Accepting and understanding that I have OCD (and that the thoughts are part of the illness) also gives me strength.  

Another key to staying well is sharing intrusive thoughts with family and friends, without judgment. This has been an enormous help to me.

I’m often so scared and embarrassed I keep these upsetting thoughts to myself. Sharing doesn’t make the thoughts go away. However, it helps me live with them.  

Not all of my compulsions, when I perform them, are noticeable. So people around me can think that I’m fine when I’m struggling. This is the part of OCD that is least understood and the reason it’s called the secret or silent illness.

By breaking the silence, I hope it becomes less of a secret, and more understood by the community and people who care about someone with OCD. 

So next time you hear somebody say ‘my OCD helps me at work’ or ‘I’m OCD about keeping the house tidy’ perhaps remind them of a fact that my psychiatrist always used to tell me: ‘if it’s useful, it’s likely not OCD’.  

Where to from here? 

  • Connect with others who get it! Visit SANE’s Lived Experience Forum to share your experiences and ask questions in a safe, anonymous space.
  • For support contact SANE's free counselling services on 1800 187 263 or online (Monday to Friday 10am-8pm EST).    
  • Check out more personal stories and useful information about OCD here
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