“I have been tutted at, stared at, followed around” - Nikki’s story

Nikki reflects on her obsessive compulsive disorder (OCD), from intrusive thoughts to structured rituals. She shares the damaging stigma she has faced in her day-to-day life from strangers and passers-by.  

Hi. I’m Nikki, I am 53 and married to a lovely man called Matt. I’m an educated, articulate person with a bunch of qualifications. I have written two books and several chapters for other books, and in my first career I was regarded as an expert in my field. I’m not telling you these things to brag, just to give you a first impression because when you read the rest of this article, you will probably forget them. So, take a moment to consider who I am before you read on. 

I have something called obsessive compulsive disorder. OCD gives me obsessive thoughts that I cannot get rid of. I spend a lot of time thinking I might kill or hurt myself or my husband somehow. To avoid making these things happen, I must perform rituals; compulsive acts that somehow stop the killing or hurting from happening. 

OCD makes me afraid to leave my house without performing many ritualistic actions repeatedly, like tapping the door frame three times on the left, three on the right, three at the top, and repeatedly until it is enough, which can be anything from a few minutes to hours later. I must get dressed in a certain order or end up naked, starting over repeatedly. When I cook, I want to cut myself with knives and must perform rituals to avoid that happening, like turning cooker knobs off and on, opening and closing cupboard doors, turning taps on and off. 

Leaving the house is easier these days thanks to Rosy, my assistance dog, as part of her training is to interrupt compulsive rituals. I went into a high street shop recently. I stand looking for something on a shelf and find myself tapping. Then a woman standing next to me spoke to me loudly and angrily: ‘what is wrong with you? You must be f&*%$*% stupid!’   

I wish I could say that that was the only time something has happened. I’ve been told that I shouldn’t be allowed to be there by myself while waiting in the queue at a coffee shop, because I was pacing back and forth causing no harm to anyone. I have been tutted at, stared at, followed around a shop by the security guard just in case I had a ‘violent incident.’  I once had a panic attack in a supermarket and was asked where my carer was, to be told that I really should have someone with me when I said I was alone.

Why people think it’s ok to watch me, judge me and speak to me in these ways beggars belief. But they do. People assume that because I’m acting in a certain way, I must be stupid, unable to control myself, incapable of taking care of myself; that I’m about to lash out violently at some poor unsuspecting bystanders. I am none of these things. I simply must perform compulsive actions sometimes and occasionally I get overwhelmed with anxiety, but I’m no more stupid, incapable, or prone to lash out than anyone else. People judge what they see. 

I’ve had OCD my whole life. Growing up, I just did things a bit differently to other children. I had a place for all my things and patterns that helped me focus. Teachers, who’d think I was distracted looking out of the window, had no idea that I was counting the panes of glass or the paving stones outside.  

I managed to live well into adulthood before going public with it. I hid my constant need to double and triple check everything under a veneer of being an excellent planner. My need to make sure that other people did things to my level of competence was covered up by freely admitting I was a control freak. My first career lasted almost twenty years, and nobody knew. I hid it out of fear, because when you are different, people judge, label and other you, often without realising that they are doing so.  

Hi. I’m Nikki, I am 53 and married to Matt. I also have OCD.