Belfast Telegraph

Monday 20 October 2014

Coming out of the closet about what it's like when your life is ruled by OCD

Obsessive Compulsive Disorder leaves sufferers feeling depressed, anxious and in despair, as two young Northern Ireland women who have started a help group tell Una Brankin

Toeing the line: the need to achieve order can create chaos for those coping with OCD
Laura McIlveen, from Antrim

David Beckham has been known to bring the military precision he displays on the football field into his home – into his fridge and underwear drawers, in particular. According to wife Victoria, the legendary footballer insists on straight lines in both compartments and spends time lining up food items and socks according to their size and colour.

But while such fussing and perfectionism is symptomatic of OCD – Obsessive Compulsive Disorder – Mrs Beckham was joking when she accused her husband of the condition in the past. The real thing, on the other hand, is no laughing matter for the thousands it afflicts in the UK.

Obsessive Compulsive Disorder is a mental health problem which causes unwelcome repetitive thoughts and behaviours – often highly distressing. People with OCD know their thoughts are irrational, but they cause them so much distress that they follow through with their compulsions to relieve the underlying anxiety.

The various different types of OCD include compulsive checking, fear of contamination, intrusive thoughts and hoarding. It's a time-consuming affliction which can have devastating effects on relationships, work life and studies. Similar to some autistic behaviours, OCD involves a fear and dislike of change, even of the most routine kind.

Laura McIlveen (19), from Antrim, has carried the burden of OCD since childhood. She recently set up the OCD NI association with fellow sufferer Emma Boyd, to help support adults and children living with Obsessive Compulsive Disorder, and is currently running a 'Stronger Than OCD' campaign to encourage sufferers to fight against the disorder and to challenge it through treatment such as Cognitive Behavioural Therapy (CBT).

"We are an independently run, non-profit organisation which exists purely to educate, advise and give support," says Laura.

"We have a great knowledge of OCD as we too are sufferers – we may not have formal qualifications in psychology, but we have lived the condition and understand it fully. This enables us to give the best support possible to those affected by OCD."

OCD NI FOUNDER, Laura McIlveen, (19) lives in Antrim with her parents and brother Patrick (22). Currently single, Laura works in a grocery store. She says:

My OCD really took control when I moved schools to do A-levels. I'd done well before then but after that, just functioning in school became difficult and I ended up having to leave, as I couldn't cope any more. It felt like my whole life had just crashed before my very eyes. I'd lost my granny, Agnes McIlveen, I'd lost the ability to function properly and I'd lost my future. This all happened so quickly. It was an extremely challenging time.

People often tell me that I'm very mature for my age, but when you've suffered as I have, you have to grow up very fast.

Both of my parents are incredibly supportive. One thing that often is forgotten is the impact OCD has on the whole family. For any parent to see a child in despair on a daily basis and to have no power to help them is a real strain.

My brother Patrick is also great, often lightening up a bad situation by having a laugh about it. Sometimes if you didn't laugh, you'd cry! Although OCD has taken many things from me, it has never got my sense of humour.

Losing granny heightened my OCD. I was incredibly close to her; she always believed in me and supported me and when she passed away I felt like I'd lost a part of me. I loved her so much and I simply didn't know what to do any more.

Just after her death, I started struggling with OCD, and although it's been three years, I still wish she was here with me. I used to go to my granny's house every day after school and catch up.

My mum always said if I'd had a bad day at school, granny and I would have sorted it all out by the time she'd be there to pick me up. I still feel I need her now to comfort me, but sadly she's no longer here.

I definitely am a perfectionist, which is a big part of my OCD. It often takes me longer to do simple everyday tasks because they have to be done to a certain standard. If things aren't done perfectly, in my eyes, I feel I've failed. Of course, this means I feel like a failure all the time, as people can't be perfect.

It's extremely draining, especially in work. I work in a supermarket and, for me, items must sit in straight lines, be colour co-ordinated, balanced and symmetrical. That, to me, is perfection and when certain items are out of place, it makes me anxious and agitated. It's like my brain can't process things not being perfect. It's common for me to feel extremely frustrated and anxious if things don't look right.

Back in my later schooldays I was terrified of speaking out in class in case I made a mistake and looked stupid. Friends sadly started to treat me differently, for reasons I still don't understand. That certainly added to my troubles at the time.

I did, however, meet some lovely people at the school who took me under their wing. It was the only thing that made school tolerable.

Others, though, have misunderstand my OCD -- it's so frustrating. People expect me to do things that I simply can't. It's embarrassing having to explain why I can't do a 'simple task'. It makes me feel ashamed.

I also constantly hear people using OCD to describe someone who is neat, or likes things a certain way. I can't explain how frustrating the term 'I'm a little OCD' is to a sufferer! I've seen people who think they have OCD because they've tidied their bedroom! OCD is a debilitating mental health condition, not a quirk.

Cognitive Behavioural Therapy (CBT) has been a fantastic help. I'm able to do things now that I never thought I could do. My CBT therapist is absolutely amazing and really cares. There's a long road ahead for me, but the progress I've made has been fantastic.

Work can be very challenging. By the end of the day I'm mentally drained. Now, because of the tics I experience, I am also physically drained.

Sometimes there are days I feel I just can't cope -- just functioning is difficult. But I work with some amazing people, whom I've told about my OCD. I can be myself around them. I don't have to pretend I'm someone I'm not. I can just be Laura.

For years I didn't see much of a future for myself and if I did, it was a bleak one. Now, I feel differently, because my psychologist has made me feel more confident and has shown me my strengths, instead of my weaknesses.

My ambition is to help others. If I have to have OCD, at least I can put my experience to good use. A mental health condition is nothing to be ashamed of.

You can't help it, you didn't ask for it. So why should people judge you for it? I want to let people know they're never on their own and there's nothing to be ashamed of. That's what I want my mark to be on the world."

EMMA Boyd (22) from Carrickfergus is a sports studies student at the University of Ulster, Jordanstown. She lives with her parents Rosie and David, and brother Mark (19). She was diagnosed with OCD in 2011. She says:

I'm a perfectionist and my experience of OCD ranges from upsetting thoughts about my health to a fixation with folding clothes -- I have to do it myself to make sure they're folded correctly. I've had symptoms since childhood but didn't recognise them as OCD-related. They worsened during my 11-plus, due to the stress.

My OCD led to a bout of depression -- I didn't enjoy anything and my social life really suffered. I was offered anti-depressants but took two courses of CBT instead, which really helped. CBT involves exposing you to your fears and making you face up to them until you realise they are just thought patterns, which cannot harm you. I picture OCD as a little monster in my head, always planting doubts. Everyone has a trace of it; with people like me, it just goes a lot further. Mum suffers a bit from anxiety, but not OCD.

Looking back, my OCD started when I was 10. It mainly involves intrusive thoughts which I try to normalise or rationalise by thinking about them over and over again in my head, or by seeking reassurance from my mum or boyfriend Stuart, who's a student at Queen's.

My thoughts usually concern family members, my relationship with Stuart, religion and more recently, my health. The thoughts about my family and boyfriend are definitely the worst, making me feel very guilty and anxious. For years before my diagnosis, I worried that I was a horrible person and not deserving of any help or sympathy. I now realise that everyone has intrusive thoughts periodically; it's just that non-OCD sufferers can easily dismiss them.

In terms of my health anxiety, I was convinced my daily headaches (which I later found out were caused by jaw clenching and tension) were a sign of a more serious health problem. Despite regular visits to my GP, I couldn't shake the fear that something had been missed and I was going to become very ill.

On top of that, I would Google my symptoms -- big mistake. I kept thinking of all the possible conditions I might have had. I became very withdrawn and my social life was practically non-existent. I felt like no one understood what I was going through.

My OCD flares up whenever I feel stressed. Recently, when revising for my final year exams, I was very focused on making sure my notes were neat and that I read every sentence so that it felt 'just right.' This was very time-consuming, as I found myself writing my notes out three or four times.

Thankfully, CBT has taught me various ways to combat OCD and I'm coping better now, just over two years since my diagnosis. Usually, I'm able to dismiss my intrusive thoughts as exactly that, just thoughts. I still find some days tougher than others; resisting the temptation to seek reassurance can be mentally draining.

I'm now in my final year at uni and hoping to graduate in July. I hope that sharing my story might encourage others who are suffering to speak to someone about how they are feeling, whether it be a parent, friend or GP. When my OCD was at its worst, it was very hard to see a way forward. Now I know that's not the case. CBT definitely helps, but the most important thing is the determination and motivation to beat the bully that is OCD."

HOW THE FAMOUS FALL VICTIM ...

* Canadian comedian, actor and presenter Howie Mandel suffers from OCD, his most frequent obsession being with contamination. "In my mind, my hand is like a Petri dish," he told the American ABC News station. "I would spend the day, as I have in the past in my life, in the men's room rubbing and scrubbing and scalding. Hand rails are my enemy. I never go near a hand rail."

The (US) Deal Or No Deal host once checked a door lock 32 times before he took his fist and punched the handle.

"I thought if I felt the pain in the door, then I know for certain (it was locked)," he admitted. "It is sometimes incredibly paralysing, and it's hard to function at times. Some people tell me that OCD and ADHD (Attention Deficit Hyperactivity Disorder) are a gift and I've used it to my benefit. If it is a gift, it's a gift I'd love to return. I would trade anything to not have this gift. Do I think it serves me? I think I'd be far better off without it."

* Best known as tough Coronation Street builder Owen Armstrong, actor Ian Puleston-Davies, is a patron of the OCD-UK organisation. The 55-year-old actor is very open about his own problem with the disorder, explaining how he would fear "that if I sat down too quickly I would crack my coccyx". He also has an issue with germs and contamination.

"My OCD would be saying, 'Do you know how many people have sat on that seat in the past half hour?' I'm not so bad now, but two or three years ago ... well, I couldn't go out for lunch with friends."

* Actor Daniel Radcliffe has had OCD since he was five years old. He has spoken of "having to repeat every sentence" under his breath and how it has taken him five minutes to turn off a light, due to irrational rituals.

Famous for his role as Harry Potter, Radcliffe told The Sun how successful therapy had been for him, and how he missed his therapist now that he no longer needs support.

"I would encourage everyone to undergo therapy," he said.

"It doesn't mean you're insane or weak."

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