Obsessive-compulsive disorder: ‘I’d go into the shower to decontaminate’

Up until just a year ago, the Dublin-based 39-year-old mother of one could not cross from the dirty world to the clean world without an elaborate decontamination ritual, which involved binning her clothes at the end of each day and donning a cheap new set from Penneys.

“As soon as I got home from work, I’d go straight to the bathroom because I didn’t want anyone to see me in my ‘dirty’ clothes,” she says.

“I would strip down, from my hair bobbin down to my socks. I’d have to clean under my fingers, brush my teeth, and make sure I didn’t have any fluff on me from my ‘dirty’ clothes. And then I’d go in the shower for an hour and 45 minutes to decontaminate. I wouldn’t leave the house after that because once I was clean, I was safe.”

Claire, who was diagnosed with obsessive-compulsive disorder (OCD) in her early 20s, describes the last 12 years — during which she “lived out of her bathroom,” — as “hell on earth”.

Though her symptoms progressively worsened after changing jobs in her 20s, she traces the initial signs of illness to a heightened sense of moral responsibility: “I felt that if anything went wrong, it would be my fault.”

This prompted her to engage in repeated checking rituals, from confirming that her hair straightener was turned off to making doubly sure that she had locked up her workplace premises.

According to psychiatrist and anxiety specialist at St Patrick’s Mental Health Services in Dublin, Dr Mick McDonough, an “exaggerated sense of responsibility and an intense fear of being guilty of wrongdoing or carelessness” is a core feature of OCD.

“It’s an anxiety disorder that’s characterised by intrusive, frightening thoughts that come with shock value.

“The thoughts can be images, words, impulses — anything that the person considers unpleasant and unwanted. The compulsive side is the tendency to feel a responsibility for fixing that thought, or the danger, that might be linked with that thought,” McDonough explains.

Centred on themes

Women are 1.6 times more likely to experience OCD compared to men, according to a 2020 worldwide review.

OCD spans a spectrum of severity, measured by the amount of time an individual devotes to their compulsions or dwells on intrusive thoughts. According to American clinical psychologist and the chief clinical officer for the virtual therapy platform NOCD, Patrick McGrath, obsessions and compulsions tend to be centred on specific themes.

These themes give rise to different OCD subtypes, such as postpartum OCD, checking OCD, and, in Claire’s case, emotional contamination OCD — the fear that contact with a person or place will lead to contamination.

Before seeking online therapy with NOCD last year, Peter Karim estimates that he was spending “upwards of seven hours per day” gripped by anxious ruminations and compulsions.

“I sacrificed so much,” the 27-year-old Dublin-based IT worker says.

“Every time I was on a holiday, at a family gathering, or even just driving, I wasn’t really there. My mind was racing ... I was waiting for the police to arrive at my door. I was planning what would happen if I went to court.”

Although Karim received his diagnosis as an adult, he can vividly recall having an unusually strong sense of responsibility for his welfare, and that of others, since early childhood. He carried a spare pair of clothes everywhere to be prepared for any potential mess and repeatedly checked inside his schoolbag for homework.

Despite having been ranked by the WHO as one of the top 10 most disabling illnesses, OCD remains a label which we frequently misapply to “clean freaks” and people whom we perceive as perfectionistic.

This tendency, according to Mr Karim, perpetuates the myth that OCD is a negative personality trait as opposed to a serious mental illness.

“A lot of people will say, ‘Oh, I’m so OCD about my desk being tidy’ and ‘I’m so OCD about this and that,’” Claire says.

“I hear remarks like that at least once a week, even in the office. I just want people to know that, for those of us who live with OCD on a day-to-day basis, it’s not a joke.”

While many people with OCD experience intrusive thoughts and exhibit compulsive behaviours from a young age, the diagnosis often arrives surprisingly late. According to McDonough, this delay might stem from a combination of inadequate support services and the fact that this sense of “magical responsibility” can be more easily masked during a developmental stage, marked by fables, folklore, and superstitions.

“A youngster may not see such behaviours as [stemming from] a disorder. Instead, they can befriend them as a way of coping with hidden dangers and a [perceived] lack of control.

“Only as they grow older, continuing to rely on these coping mechanisms to feel safe, do these behaviours begin to stand out as irrational,” the psychiatrist says.

Intrusive thoughts

Emma Griffin is a 39-year-old university administrator and mother of three. She was 12 when she first started exhibiting signs of OCD. Her earliest memory of the illness was becoming convinced, after a series of fainting spells, that she had HIV — a secret that she carried around with her for many months until a doctor confirmed that she was, in reality, experiencing anaemia.

Intrusive thoughts and compulsive rituals formed an integral part of her growing up.

On her way to bus stops, Griffin would often miss her bus because she had to repeatedly turn back every time she stepped on a road marking. Whenever she was in a church, she was consumed with the anxiety of trying not to have “bad thoughts” for fear that Jesus might overhear them. But it was not until Griffin turned 18, and was preparing to sit her Leaving Cert exams, that she received her diagnosis.

“I wasn’t sleeping and I was having these really awful intrusive thoughts all the time,” she says. “During my mock exams, I wasn’t able to write down certain numbers, like the number six, which had a bad association. I remember feeling really angry and frustrated at myself too, because I just couldn’t understand what was wrong with me.”

Although initially reluctant to take prescribed medications, Griffin says that they have since proved to be “a real lifesaver”.

Following a brief hospitalisation during her first pregnancy, when she stopped taking her medications and found that she was unable to leave her apartment, Griffin believes that a sleep routine, therapy, and adherence to medications have “given her [her] life back”.

“This illness can be so unbelievably tough. But it’s important to be kind to yourself, to realise that the journey is life-long, and to find the treatments that work best for you,” she says.

Self-compassion remains one of her essential tools for navigating life’s stressors, be it the challenges of pregnancy or the demands of work — both of which have the potential to reignite high levels of anxiety.

For Claire, Karim, and Griffin, improvements in quality of life were tied, not to the total disappearance of their intrusive thoughts, but to changes in their responses to these thoughts.

While combinations of drug and non-drug-based treatment options can be beneficial for people with OCD, especially those who have additional mental health diagnoses, Karim and Claire benefited greatly from a specialised form of cognitive behavioural therapy (CBT), known as exposure and response prevention (ERP) therapy.

“Using this therapy, we’re asking people to test their fear ideas through exposure experiments,” McDonough says.

“It’s about placing yourself in situations where the frightening thought will arise and learning not to fix the thought, but instead to wait and see if that imagined catastrophic event actually happens.”

According to McDonough, medication and psychological therapies like ERP can bring about “substantial improvements”.

For Karim, learning how to sit with the feeling of intense anxiety—a process which he describes as “sticking with the ick”— has meant fewer hours in compulsive rituals.

For Claire, the gruelling process of repeatedly exposing herself to that which she fears the most, has allowed her to recover parts of her life that were previously unimaginable. Now, she can pick up her son from school.

There is no magical or effortless cure for OCD. But, having lived in four different worlds for 15 long years, Claire and her therapist have jokingly adopted #OneWorld as a powerful testament to her progress.

• Claire does not wish to reveal her surname