If your mind is plagued with unwanted thoughts each day, how do you even get to work, let alone get any work done?
It has made its way into the vernacular as something of a glib joke. Those who don’t live with the disorder will casually say, “Don’t move that! It upsets my OCD.” Crucial to these jokes is not understanding just how debilitating Obsessive Compulsive Disorder (OCD) can be.
Tanya, a peer ambassador at SANE Australia, a mental health support and advocacy organisation, has been living with OCD since childhood, but was only diagnosed as a young adult. While her obsessions usually centre around a similar theme – that she’s a bad person and might accidentally harm others – her compulsions are ever-changing.
She once spent 12 hours taking meticulous measurements of her body, looking for signs of illness. She has washed her hands until they were red raw. She’s kept herself up all night worrying that her actions would somehow negatively impact others, and she’s avoided washing her dishes for fear that she would contaminate others who used the same dish.
These behaviours can become all-consuming. It doesn’t just make being productive at work difficult; getting there in the first place is often a challenge in itself.
When you think of OCD, you might imagine someone lining their pens in a neat row or being unable to leave the house until they’ve checked, seven times, that their stove is turned off. Yes, there are elements of OCD that present in this way, but it is more complex than that.
It is classified as an anxiety disorder where people feel involuntary obsessions that can then lead to extreme compulsions. The obsessions are the thoughts or impulses. The compulsions are the behaviours.
Tanya describes OCD as an iceberg. The compulsions are just the tip. She says they’re an outward manifestation of inward distress.
“There’s a lot of distress that happens before we start doing the thing that calms us, and that’s usually what the compulsion is. It doesn’t often work, but that’s why we do it.”
Dr Michelle Blanchard, deputy CEO of SANE Australia, says, “There’s no typical OCD behaviour, even though there are some stereotypes out there about what OCD experiences look like.
“It’s a condition that affects around two per cent of all Australians. It often starts during childhood and adolescence, and can co-occur with other forms of mental illness like depression, borderline personality disorder or schizophrenia.”
It’s a myth that OCD is all about obsessively cleaning – that’s just the compulsion that gets the most airtime. The other commonly known compulsions are repeatedly checking things, hoarding, kleptomania, skin-picking, tics, counting and arranging, constant doubting, obsessive fear, checking in with loved ones too often, turning things on and off, and opening and closing things.
Just as the compulsions are wide-ranging, so too are the obsessions. They can include fear of harming oneself or others, intrusive violent or sexual thoughts, fear of losing things, excessive focus on morality, severe superstition, or fear of being contaminated or contaminating others.
Blanchard says a lot of obsessions can centre around religion.
“An example might be someone who simply cannot do something else in their day-to-day life unless they’ve prayed in a particular way. Not because that’s important to them and their religious identity, but because the anxiety around praying in a specific way prevents them from being able to get on with their day.”
Tanya experienced this as a teenager. But it wasn’t her days that were affected; it was her nights. She grew up in a religious household and at the time was starting to question her sexuality (she now identifies as a lesbian).
“Having grown up in the church, being lesbian was seen as very sinful. Also, I went to school in the 90s, when we were hearing a lot about the AIDS epidemic and stuff like that. I just associated being gay as being a bad person and this made me hate myself.”
When she was younger, she would often wash her hands excessively to the point where they were red, sore and scaly. She remembers a primary school teacher looking at her hands in disgust. “She said, ‘What’s wrong with your hands?’ And I felt so much shame.”
She said her obsessive hand washing could have been connected to her thoughts around being gay and “washing the sin away”.
“And then that changed to repeating different words and saying prayers. I would say the Lord’s Prayer and I would repeat it a lot at night. Each time, I would feel like I hadn’t said it correctly and I would have to do it again. I remember being really worried about the pronunciation of ‘ah-men’ or ‘a-men’. I used to think of saying a prayer as having a telephone conversation with God, and to say ‘ah-men’ or ‘a-men’ would be to hang up the phone. But if I said it wrong, I thought I was still on the connection and then other people couldn’t pray.
“I was really panicked about that. So I’d just lie in bed saying ‘ah-men’ and ‘a-men’ over and over and over again.”
The complexity of OCD is a sentiment expressed by many other people living it.
In a TEDx Talk, Samantha Pena shares her unique experience of living with OCD. Her fixation is symmetry. She recalls getting into a fight with her brother when she was eight years old. As brothers sometimes do, he shoved her and she went flying into a pole behind her, taking the brunt of the impact on the left side of her body.
“My automatic reaction wasn’t a feeling of physical pain… I could feel that my left arm was cold from the metal and sore from the impact, but none of that was in my right arm,” Pena explains on the TED stage. “I was unbalanced. I was uncomfortable. My heart started to beat faster and my chest started to tighten.”
She needed both sides of her body to feel the same. So she got up and rammed herself into the pole, but then her right side was throbbing harder than the left. In an effort to achieve an equilibrium in her own body, she continued to thrash herself against the pole, covering herself with bruises that required physical therapy.
“When I was a child, I deduced that everything in respect to one’s body needed to be symmetrical,” says Pena.
If things were out of balance, she had a strong fear that something bad would happen to her. What that something was, she didn’t know. She says it’s like being underwater for too long. You don’t know what will happen if you stay there, but your body is screaming at you to get out.
Pena and Tanya’s experiences are just two of the many out there. The differences between them show just how diverse OCD can be.
If you’re unsure how to react when a staff member discloses that they live with OCD, think about how you would approach any other mental health condition, such as depression. You might ask the employee what support systems could be put in place to help them and who would need to be notified both internally and externally (with their permission) in the event of a crisis. Then, together, you can formulate a plan for the future.
“When I was a child, I deduced that everything in respect to one’s body needed to be symmetrical.” – Samantha Pena
You might also ask questions around certain triggers. Is there a certain time of year when they feel worse? Are they getting enough sleep? Is their workload having an impact? The same questions should be asked of someone living with OCD.
“Have an open conversation with the employee about what their needs are and then create a safe environment for them to share where they might need additional help and support,” says Blanchard.
“Just be aware they might have a compulsion to complete a specific behaviour. Be curious about what might be going on for that person. You never know what could be driving that kind of behaviour.”
After graduating from university, Tanya was employed as a medical scientist in a pathology company for three years before focusing on her mental health took precedence over her job.
“I was so anxious. I was grinding my teeth so badly I needed to get a lot of dental work. I had exposed the nerve endings of my teeth. I wasn’t sleeping very much at all. I was vomiting from anxiety most days,” she says.
Her employer at the time was aware of her OCD and other mental health-related issues. She’d accessed the employee assistance program (although she had to go hunting for the contact information) and had been hospitalised on a few occasions – which the organisation also knew about.
When she returned to work, she asked to work from 9am-5pm after having previously done shift work. After a few months, she started feeling pressured to return back to her previous shift work hours.
“There was a lot of questioning from the management, like, ‘When do you think you might like to do more shifts or change your hours?’ I thought I probably couldn’t ever go back to shift work. It was too disruptive to my sleep. It caused too much additional stress and, as a result, my mental health suffered. But I didn’t feel comfortable articulating that because I already felt so much shame from them knowing I’d been in hospital.”
The culture of the organisation did not put a focus on employee wellbeing. This made it harder for Tanya. She feels that if they’d just said, “We prioritise the mental health and wellbeing of everyone”, she would have felt much less ashamed of talking about her personal circumstances. But they didn’t.
“Even though I’d been given a diagnosis, I didn’t really understand what OCD was. Because I was working in a lab with HIV positive samples, I thought, ‘I must be afraid of contamination. Maybe this isn’t the right job for me.’ And so I decided to quit.”
But it wasn’t fear of contamination. It was her OCD and a deep-seated fear of accidentally hurting others. She’d worry about mixing up someone’s test results and the implications that could have.
Simply having an EAP isn’t enough. It’s clear that even though this organisation may have meant well, it wasn’t prioritising the mental health of its staff – and that can have dire consequences.
The workplace barriers for people living with OCD aren’t always the result of poor management. The realities of the disorder are often the biggest roadblock, no matter how supportive the employer.
On the Queensland government’s health website, public servant Mark shares his story of the discomfort he feels when his OCD is noticed in the workplace.
“The three things that are the hardest for me are the guilt of having it, the shame of trying to hide it and the humiliation when someone sees you… I had to pull all my workmates aside and say, this is hard for me and I’m sorry you have to see me repeating things. You have no idea how much I’ve done just to get to this workplace this morning.
“It’s not rational, it’s not reasonable. It’s against my will and I don’t want to do it. It feels like I’m so busy trying to live, that I’m forgetting to live.”
For people who don’t live with OCD, it’s hard to imagine what this feels like. We all have that little voice of doubt in our head. But imagine not being able to shut it off without acting in a way other people felt was bizarre.
Blanchard says one of the biggest barriers people with OCD face is stigma and discrimination. “Unfortunately, because these experiences aren’t particularly well understood, it can mean that people feel less comfortable talking about them in a work environment. It’s really important that we act to open up that conversation in workplaces.”
It’s encouraging to know that with professional assistance, lifestyle adjustments (Mark likes to go for walks – “It’s a time I can be free of OCD”) and support from friends, family and co-workers, some people find they are able to manage it.
“It’s against my will and I don’t want to do it. It feels like I’m so busy trying to live, that I’m forgetting to live.” – Mark
Tanya is now a peer worker for a mental health organisation which is much more supportive of her condition. But that doesn’t mean her work days pass without challenges.
Sometimes her compulsions can rise to the surface at inopportune moments, such as when she’s doing case notes on a client. “I want to be a very honest person and so I read over my case notes again and again, to make sure I haven’t missed anything.”
This can take her a very long time, but rather than reprimand her for taking too long, her manager suggests she saves her progress and returns to it the following day.
“Just having my manager point out that it might be my OCD is helpful. Even though I’ve been living with it for a long time, I still don’t recognise when I’m getting into that thought spiral. So having it pointed out to me means I can put a time limit on myself.”
Advice to employers
At this point there aren’t many in HR who haven’t heard about the benefits of diverse talent. But it’s worth repeating that neurodiverse employees can bring unique perspectives that contribute to both an organisation’s success and its culture.
“People who live with a mental illness are often incredibly resilient and empathetic. They might have insights into life that other people haven’t developed. I encourage employers to keep an open mind. Be open to the person sitting in front of you rather than a stereotype you’ve heard about,” says Blanchard.
She also says employers need to keep language in the workplace stigma-free. So if they do hear someone using the term ‘OCD’ colloquially, they should call it out “in the same way that they would call out language that was sexist, racist or discriminatory in any way”.
“People might say something like ‘I’m being a bit OCD’ when they’re cleaning the kitchen. That kind of language is really unhelpful and trivialises the person’s experience of mental health difficulties,” says Blanchard.
Tanya says it’s important to have mental health policies in place to support all staff, not just those who’ve disclosed that they have a mental health issue.
“We all have mental health that we have to look after. Although it makes us feel safe to think mental illness couldn’t happen to us, it can happen to anyone. If we start looking after our mental health before it becomes a problem, then it might never become a problem.
“Don’t do what I did, which was wait over 10 years to see someone about it.”
If you would like support in dealing with a mental illness, you can reach the SANE help line between the hours of 10am to 10pm weekdays on 1800 1872 63. Or visit sane.org for more information.
This article originally appeared in the October 2019 edition of HRM magazine.
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