These Intimate Portraits Show The Reality Of Living With OCD

Obsessive compulsive disorder (OCD) is a largely invisible mental illness. To those who have never experienced it in themselves or loved ones, it may seem easy to spot: you imagine people repeating phrases, compulsively turning lights on and off or washing their hands until they are raw. It is seen to revolve around a love of cleanliness or perhaps a desire for order, leading people to describe themselves as "a bit OCD" if they enjoy a meticulously organized desk. This public image glides over the churning internal turmoil of OCD and the ways it affects around 1 in 40 adults in the U.S.

The simplest definition of OCD is that it is a serious, anxiety-related condition whereby a person experiences frequent, intrusive and unwelcome obsessional thoughts (obsessions). The recurrence of these thoughts is intensely distressing and the individual feels out of control and seeks to soothe the anxiety through repetitive behaviours or rituals (compulsions) in order to prevent a perceived harm and/or worry on which their obsessions have focused. The irony is that the relief is only temporary — every time the obsession is triggered, the panic starts anew. It can develop at any age and affect anyone, and can be triggered by life events or past trauma (though this isn’t always the case). Its impact can range from mild to severe, although the book Obsessive-Compulsive Disorder: The Facts reports that a disproportionately high number (50%) of OCD cases will fall at the severe end.

Compulsions can be external but can often be internal — repeated analysis of memories or checking of actions, a compulsion to confess to imagined sins. Crucially, whether external or internal, compulsions are often hidden. The shame around the obsession itself as well as the inability to dismiss those fears like everyone else keeps it bound up within you, perpetuating the cycle. At its worst, it can take up hours of your day in rituals or absorb every moment of your waking life, leading you to distrust your own memories, overanalyze dreams, disconnect from the present and deeply fear the future, all while withdrawing from the world around you.

I know this because I have struggled with OCD since 2019 and the hardest thing to convey about it is how much it hurts. OCD is a kind of despair — a deep, gnawing panic that can be set off by the most inconsequential thought or phrase. That thought or phrase splinters and balloons in your mind and before you can respond, waves of emotions engulf you. At its worst, thoughts aren’t words anymore, they are a screaming static and reality feels like it’s fallen away from beneath your feet. All you have is a terror that what you’re scared of will come to pass because of you, unless you carry out the soothing compulsion. Until you begin to recover it is constant. Daily, hourly, minute by minute, you are in a mental battle with yourself.

It is only in Hannah Norton’s photo series 20 Seconds To Safety that I have seen a visual depiction that reflects this reality.

The collaborative project is based on her younger sister Katie’s experience of developing OCD around a fear of infecting her vulnerable mom with COVID-19. Hannah tells me it was an attempt to reflect the emotional, all-encompassing nature of the disorder. The result is almost claustrophobic, panic and distress swarming and pushing out any feelings of calm or trust. The series captures what is most impactful to me about OCD: It transforms life's mundanities into threats. In this way it can feel inescapable.

Katie's OCD is clearly linked to the pandemic: "I was studying for a food degree at university at the time and I got a phone call from Dad to say that Mum had been diagnosed with breast cancer." She and her sister went home to spend time with her mother and a couple of weeks later, coronavirus hit. The need to protect her mom was immediately clear, she says. 

"Because of Mum's treatment, we were told by consultants at the hospital that we couldn't wear shoes in the house, we had to wash our oranges, we had to literally be [so conscious of infection]," Katie says. As Katie was at university and interacting with people (albeit socially distanced), it became increasingly worrying to her to think that she could have a detrimental effect on her mom: "That's when the OCD started."

Her compulsions focused on fear of contamination — from door handles, from other people, from groceries brought into the house — and centered on the dominant government advice about how long to wash your hands for. This ultimately led to the name of Hannah and Katie’s project, 20 Seconds To Safety.

"The name came about because Katie's compulsion is hand washing," says Hannah. "The government advice was [to wash for] 20 seconds, so 20 seconds became a real point for Kate and she would count it out compulsively." As with all compulsions, this only momentarily alleviated the panic and the counting could often run in cycles. "I wanted to focus on this idea that when she washes her hands for 20 seconds, there is some sort of comfort and safety on the other side of that. But it’s only temporary — the 20 seconds would end and then the cycle would start again."

As is often the case, the scale of the obsession (as well as the responding compulsions) can bloat and expand over time. It has reached a point where Katie’s response is all-encompassing. She gives this example: "You know when someone pushes past you and they don't say sorry — if someone did that to me in the street, I'd probably have to go home and have a shower. That's the seriousness of it that people can't ever comprehend." 

It was only when talking to Hannah about the extent of her anxiety around coronavirus that Katie sought help. She spoke to her GP about it and he suggested that she probably had OCD.

This informal diagnosis inspired Hannah to create the photo series. "I remember I was almost surprised: what I'd seen was something so emotional and something so consuming, which hadn't aligned with what I thought OCD was, having had no experience of it before. It was so consuming. I wanted the world to know what an emotional struggle it is and how wrong the narrative around OCD is," she says. 

Hannah collaborated with Katie and their mom (whose safety was one of Katie’s triggers), aiming to produce a body of work that looked nothing like the assumptions about OCD. They zoomed in on otherwise mundane parts of a person's day, like going for a walk, with Katie explaining to Hannah how she now approached these tasks. "I asked Katie to explain the process of opening her front door," Hannah says, "and the level of detail and thought and planning that's gone into that — I wanted that to be apparent. These things that I don't think twice about and the way that someone who doesn't suffer from OCD can move so easily through life. I wanted to touch on those micro moments that become huge when you're suffering with OCD and anxiety." In the photos, coloured dots depict the minutiae of each thought, feeling, and decision, crowding Katie and jostling for attention. Each emotion flares and subsides depending on the activity but they remain constant — lingering or swarming with each trigger.

Despite a clear pattern to how Katie’s obsessions developed, as well as an informal diagnosis from her doctor, she initially struggled to find a therapist who understood what she was going through. Therapies that focus on how past events shape us and believe that there is a deep root to all our problems do not necessarily work with this form of anxiety. Put frankly, taking thoughts seriously is how the problem started and being encouraged to lean into these thoughts in a therapeutic context can exacerbate distress.

This is what happened to Katie, who describes her initial experiences as "absolutely shocking." Her first contact was solely concerned with whether she was suicidal and was uninterested in anything else. Her second therapist was, in some ways, worse. "He was agreeing with all the things that I was doing and just reinforced the OCD. I gave up. People say the hardest thing is to seek help but I was doing that and I wasn't getting any help."

The lack of understanding only added to the isolation of the condition. If the therapists cannot understand, how can you expect anyone else to get it? The sad answer, too often, is that you can’t. 

"It changes your life," Katie says. "I've stopped seeing friends, I've stopped going out... I am getting better at that now but in the past I didn't go and socialize because of the OCD. I still have a few friends but I have one friend that says, 'Oh Katie come on, just get over it now'."

Happily, Katie has now found a therapist who gets it. "She's very patient, which is key, and she's not judgmental. That's so important. I've met so many therapists who are so judgmental. So many think that all your past life is so important — it probably has some impact but not as much as the therapists think."

Katie is slowly getting better, but the path is not linear. You cannot undo all your compulsions at once and she still wears a mask at work though no one else does. She says to her manager that she does this to protect her mom but thinks she probably clings to it because it makes her feel safe. However she doesn’t know how to explain this to her colleagues. "I don't feel like I can tell anyone I've got OCD because I know no one will understand it. So what's the point? You shouldn't have to feel like that. That's what needs to change – it needs to be much more understood."

20 Seconds To Safety shows that although the focus of obsessions can vary hugely, the way that OCD can distort your life remains constant for people who have it. OCD itself is far more common than you feel it to be when it is at its worst. Realizing this can be a lifeline — knowing that you are not alone, and recovery is possible. As projects like this help us to better understand OCD, perhaps those who are struggling won’t be left feeling so misunderstood and isolated. Far more needs to be done — more investment in mental health services being a crucial piece of the puzzle — but if we’re encouraged to treat each other with greater patience and kindness, we can all help in our own way to alleviate the distress.