The problem with hidden illnesses is that they are indeed hidden. Suze from Hove shares her experience of living with OCD – and hopes it'll inspire others to break free from shame and islolation. 

You can’t truly understand the scale of obsessive-compulsive disorder (OCD) unless you've experienced it – unless you've been there, done it, and checked multiple times that you do in fact have the T shirt.

The reality of living with OCD for me, was being tormented by the ‘everyday’. At its worst, I was convinced I was losing my mind. 

Where did it start?

In my early childhood I was secure, and as is normal, I was encouraged to be careful with my possessions and to check I had my things, closed my windows, and locked my locker, before I left.

Then, in my 20s, I was burgled, I made a stupid mistake at work and my flat-mate was assaulted in our stairwell.

I internalised some guilt I felt around these things. An ‘if only’ mantra started to play out in my mind – ‘if I had done ‘X’ then I could have stopped that, and ‘Y’ would not have been hurt’. I started to catastrophise – taking each scenario to the worst possible outcome, and letting that play out in a loop in my mind.

Bad things happen. It’s how you process them that is key to keeping balanced and mentally stable.

Checking

OCD can take many forms – mine was all about checking and the reassurance that came from those checks.

I’d wake at night to check (and re-check) doors. I’d test the lock by unlocking the door, then once back in bed, scared in case I hadn’t don’t it properly I’d head back down and re-check.

I opened and checked sealed envelopes before posting them.  In case I had put something else inside – something which would lead to embarrassment or criticism or shame.

I made sure I felt pain on turning a key or pushing a door shut so I stood a better chance of recalling that check.

I constantly checked my children. Are they drinking enough? Are they ill?  Did I give too much calpol? Are they are going to die?

I knew I was still sane and how irrational it was, but I couldn’t stop myself.

Fear

I was scared to go to bed, fearful of the long nights, of waking in terror, paranoia that I hadn’t checked properly, that I had forgotten.  At its most crippling, my heart rate was off the scale; I would wake up fighting to breathe, in total panic. I’d find myself standing on the landing or at the top of the stairs – projected out of bed by the fear.

The fear of what? The fear of guilt and of blame – ‘I did something stupid and it hurt or damaged the people I love, I’m in trouble, I did bad, I am worthless, I can’t even lock a door, I’m pathetic, I am nothing, I am a danger, I shouldn’t be here...’

OCD for me, is a kick-back against being a grown up. It’s a sign that everything has become too much. I craved reassurance constantly, wanting to push the responsibility elsewhere, but distrusting everyone but myself.

Living with OCD

As with sufferers of all mental illnesses, I have had to find a way to live with it. To accept the ebb and flow. To know that I might hit the lowest of low but that I will find a way back from that.

My turning point was seeing my then 9-year-old watching me check the front door for the umpteenth time. I could not risk projecting it on to my children.

I had some very good CBT where I learned that blame lay with ‘the bad people’, and not with me; and I pushed myself out of my comfort zone. Challenged myself to check just once then walk away.

What else helped?

I have the support of an amazing friend who, to this day will tell me ‘this is not your fault’.  Help me to get some perspective and reassure me, that even if I have lost my keys, it’s okay.

I also had some medication which didn’t seem to help at the time, but maybe it did?

I took the time to learn more about myself, my reactions, how the adrenaline surges a made me feel, and about my hormonal cycle. I recognised that at certain times of the month the drive to check was much stronger.

Understanding my condition better took away some of the fear. Most importantly I fought to beat the self-loathing and as my children grew, my relationship with them helped me enormously.

I still wobble. But when I find myself repeatedly checking, I know that there’s another reason. It’s not, in fact, about the back door. I stop, take a breath, I am ‘mindful’. And I try never ever to forget 'this too shall pass'.

Why stay anonymous? Even writing this blog, although cathartic, has caused me anxiety.

What if people judged me, started to see me differently, there's such stigma around mental illness - what it affected my work and those relationships? What if the school mums see me differently and won't let their children come to play.

If my condition became common knowledge, would this start to define me? "There's that woman who can't put petrol in the car, who'll get up in the night to check the garden hose."

Being transparent opens me up to my biggest fear: that I'll be seen as an unfit mother.

But to share our experiences is going some way to challenge to judgements and break down stigma. I hope my post inspires others to do the same. 

 

Do you have a Hidden Story you'd like to share with us?  

We'd like to know how your invisible condition has affected your day-to-day life, and hear of the kind gestures or dismissals you've experienced along the way. Or can you offer a perspective as a friend, family member or carer? Or as someone who now feels differently after learning about someone's experience with an invisible illness? 

The stories we collect will form part of our Hidden Stories project, which is about exploring – as a community – the way we behave towards people with conditions and illnesses which can't be seen. Only by sharing our experiences can we begin to understand them. 

Get in touch with Jessica (jessica@rootexperience.org) and we'll help you to (sensitively) share your story and find support if you need it. 

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We've started an online Hidden Stories community for those living with or affected by invisible conditions and disabilities. As a closed Facebook group, it’s a safe place for sharing stories, asking questions, and for mutual support and solidarity – amongst  people who really know how you feel day to day.

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