‘Don’t trivialise OCD - it’s hideous and debilitating’

Jo Flack has to plan her life very carefully to avoid having to leave home more than once a day.

In many ways, it’s not leaving that’s the biggest problem. It’s returning.

For Jo, getting home doesn’t involve kicking off her shoes in the hallway and heading to the kitchen to put the kettle on for a cup of tea or pouring herself a glass of wine to help unwind at the end of the day.

Instead it’s a lengthy ritual that starts as soon as her key is in the lock, with cleaning the soles of her shoes and heading upstairs to the shower - without touching anything on the way - to wash while still fully clothed. In the shower she then peels off her wet clothing before putting it in the washing machine for a more thorough cleansing.

Only then, when she’s been “decontaminated” from the many germs she might have unwittingly carried into her home, can she start to feel better.

It’s a lengthy, debilitating ritual and one that Jo knows, in her heart of hearts, is not actually necessary.

“But then,” she says, “mental illness is something you can no sooner reason your way out of out of than you could reason your way out of having a broken leg.”

Jo, who works for a national charity teaching students with complex needs, suffers from Obsessive Compulsive Disorder (OCD).

She’s come to see the illness as a demon that has taken root inside her head and spiralled out of control.

“It is not my disorder,” she says. “I do not own it. It seems to own me and my life.”

And like many mental health conditions it can bring with it stigma and feelings of shame and guilt.

But Jo is refusing to be cowed into silence. Instead she has become a champion for the anti-stigma campaign Time To Change and has written a book called Obsessive Compulsive Demon about her battle with OCD, believing that breaking the taboo around mental ill health is vital to help those who suffer and foster more understanding among those with no direct experience.

She has no idea why the OCD started and in many ways, she says, that doesn’t really matter. What’s more important is trying to banish it. She’s making progress, with the help of medication, support from family, friends, self-help methods and intensive therapy, but she acknowledges she’s still got a way to go.

“I’d like to get rid of it completely,” she says. “That’s my ultimate goal.”

Jo, a fast-talking, lively Oxford University graduate who lives in Ipswich with her partner, Siegfried, has a history of mental health problems and has gone through periods of self-harming. But nothing prepared her for the onset of OCD.

“I suppose, looking back to my childhood, I do have memories of incidents in my past,” she says. “I remember receiving an illustrated book on the gospels and seeing a picture of Judas hanging himself. I was troubled by the fact that I had touched the picture.

It made me feel dirty. I washed my hands afterwards and never touched the book again.

“Another time I remember eating some little party food-type crisps and there was a voice in my head telling me that if I didn’t eat one more something bad would happen to my brother. I ate so many I made myself sick.”

But these were just isolated incidents. About five years ago, without warning, Jo found herself getting concerned about germs, particularly those from other people’s vomit and body fluids.

“It started as I was going on holiday to Cuba,” she says. “As I was packing I found myself worrying about things being dirty.

Within six months it had developed into full-blown OCD and I became genuinely ill. It was overwhelming how unwell I became. It is hard to actually describe how debilitating it was and how it took away my liberty.

I have a particular thing about pavements and what might be on them and I started to develop a fear and anxiety about things being on the floor. “OCD is different for everyone and I can only describe how it affected me.

There are repetitive, intrusive thoughts, which are different for everyone, and then compulsive rituals you perform to try and relieve your anxiety.

The whole thing just becomes a vicious circle.

“OCD is often misunderstood or trivialised. People will often make light of it or say things like: ‘I’m a little bit OCD’, as if it’s a quirky character trait. But if you’ve actually got OCD it is hideous and debilitating.

“You can’t be ‘a little bit OCD’. You would never say you were glad you had it or that there was anything positive about it. It robs you of so much and makes you terrified of your own thoughts.

“No-one knows what causes OCD. It could be linked to perfectionism, there’s possibly a hereditary element but for me it almost felt like it was some kind of self-sabotage. I had just bought a flat with my boyfriend, started a job I loved and was about to go on holiday. It was almost as if everything was too perfect.

“It started with little things like having to wash my hands a few more times after being to the toilet, to walking in a stain on the street and wondering if it was vomit or poo and thinking, ‘I’d better wash the bottom of my shoe because if I walk on the carpet in my hallway it’s going to be dirty’. It quickly progressed to more and more intrusive thoughts and ritualistic behaviour because of the anxiety.”

Because of her washing ritual Jo can’t just pop out to the shops if she runs out of milk or bread. Her boyfriend has to make those kind of trips. Neither can she take a mobile phone or handbag out with her. Washing them is just too time consuming and difficult, if not downright impossible. Once, she even had to get a new passport after ruining her old one by putting it through the washing machine.

But, she says, things are better now than they were.

“At one time I could be stuck in the bath cleaning and cleaning again for eight hours. I am managing better now but I would like it to go away completely.

“When I was really ill it was almost as if I was blaming myself for getting ill. That’s how the stigma of mental illness can make you feel. But I now realise that mental illness is indiscriminate. Anyone can get it. We all have mental health and we all have times when our mental health is better than at others. Sometimes it develops into mental illness.”

Writing the book was, she says, a bit of self indulgence (she’d always wanted to write one) but she was mainly motivated by the fact that it was the sort of thing she tried to find when she fell ill and couldn’t.

“I also wanted to let other people who are suffering know they are not alone,” she says.

Even at her lowest point, however, she was able to carry on working and socialising. And she is not a fastidious house cleaner, although it is hard for her to have visitors at home.

“I have never become reclusive,” she says. “But life does take a lot of planning and forethought. When going out I have to consider what is the best order to do things to limit anxiety.”

As her illness took hold friends and family noticed a change in her behaviour.

Her mum eventually persuaded her to see a doctor. He suggested medication to help with anxiety and although Jo at first baulked at the idea she now believes it has been a huge help. She has also participated in a trial into self-help treatment methods and has had some cognitive behaviour therapy, which was unfortunately cut short when the counsellor left and was not replaced.

“I don’t think the intrusive thoughts have gone but my rituals are less,” she says. “It’s almost like I’ve got OCD down to a fine art and because I now don’t take a phone or a bag out, things that used to take a long time take far less.

“My boyfriend has been fabulous and I have amazing friends and family around me and I have always been able to talk things through with them.

“Through talking about my own experiences I’ve been contacted by loads of people telling me about their own mental health issues and how they have never felt able to talk about it because of stigma and discrimination, which can be nearly as bad as the disorder itself.

“There is a need for change and to end the taboo. It would be great to live in a world where it was normal for people to feel able to talk about mental health.”

Jo’s book, Obsessive Compulsive Demon, is available from www.amazon.co.uk. To find out more about the Time To Change campaign visit www.time-to-change.org.uk.