Image via Flickr user Arlington County
My mum has obsessive-compulsive disorder. Her illness revolves around a fear of contamination – anything dirty or dusty, especially sand, is a trigger. Items she considers “dirty” she won’t touch, and the items she deems “safe” will be repetitively cleaned.
As a kid of a parent with OCD, you often end up doing things that will alleviate that person’s fears. Experts call this “enabling behaviour”. My enabling behaviour was anything from opening doors so my mum didn’t have to wash her hands again (doors were dirty). Other times, I’d explain to the confused girl on the ASDA checkout why nothing could be allowed to touch the conveyer belt (checkouts: dirty).
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When Mum was at her worst, I’d have to undress at the front door after school, my clothes taken off me and bagged in individual supermarket carrier bags – like ASDA-branded crime scene evidence – to be dry-cleaned daily at exorbitant cost.
Everything was dirty.
Her OCD had a massive impact on my life growing up. Friends (dirty) weren’t allowed over, ever. Sport (outside: dirty) was discouraged. Beach holidays were a no-go, because sand. I know better than anyone how awful and disabling OCD can be. So, as you can imagine, I’m pretty pissed off that I developed it, too.
My OCD is a lot less severe than Mum’s and doesn’t centre on cleanliness. I have “safe” numbers (five and seven, since you ask), and need to conduct my life in multiples of these numbers. So that’s five mouthfuls of pizza at a time, washed down with seven sips of coke, then another five bites of pizza. If I miscalculate, I panic and start the counting from the beginning, while also tapping the table seven times with the fifth digit of my right hand to make up for it. If there’s a plus side to all this, it’s that having to multiply five and seven in my head all the time has made me fucking brilliant at mental maths.
When Mum was at her worst, I’d have to undress at the front door after school, my clothes taken off me and bagged in individual supermarket carrier bags
Luckily, as a result of cognitive behavioural therapy, particularly Exposure and Response Prevention (ERP), it’s under control. I only struggle when I’m really stressed – usually when I’m under a lot of pressure at work or in my personal life – when the counting thing can start over again. Believe me, the last thing you need when you’re stressed out is to have to get out of bed five times in the middle of the night to touch a door seven times. Dr Jim Bolton, a consultant psychiatrist, told me that “around a third of OCD cases are catalysed by stress”.
There is also some genetic aspect at play. According to this study, OCD appears to run in families. The same study tells us that 40 percent of people with OCD have a close family member with the illness. And, while the OCD rate in the general population is between 1 percent and 2.5 percent, if you look at the relatives of people with OCD, it’s closer to 12 percent. This means, in theory, that you’re approximately six times more likely to have OCD if a family member also has it.
It’s unclear whether this increased rate of OCD in families is caused by environmental or genetic factors. Frankly I’ve often blamed my mum for giving me OCD – reasoning that the enabling behaviour I carried out for her caused me to develop obsessional thoughts of my own. As a result of these feelings of blame, there’s definitely a big part of me that wanted to believe that OCD is genetic, that my mum’s DNA, rather than her behaviour, gave me OCD.
But although any kind of genetic predisposition for OCD has not yet been proven conclusively, Professor Gerald Nestadt of the OCD Research Centre at John Hopkins University told me that “between 40-80 percent of OCD cases can be defined as being caused by genetic factors”. He explained that there’s probably not a single gene that causes OCD. Rather, it’s polygenetic, which means there’s a group of genes that cause it.
Nestadt hopes to one day be able to identify the exact pathway in the brain that causes OCD and target this with drugs. If he’s successful, he’ll create the first chemical treatment for mental illness that’s more than just an educated guess aimed at a general area of the brain. As he explained, a “cure for OCD which specifically targets isolated biochemical pathways in the brain would be a world first in the medicine of mental illness, and it’s what we’re aiming for”.
I can see why the idea of a magic pill to “fix” OCD is so enticing – mental illness can be a lot harder to treat than physical illness. It’s not like an infection where you can just take a course of antibiotics to kill it. No, OCD is – like many mental health conditions – caused by myriad emotional and psychological factors, many of them environmental. For now, the most effective treatment option, according to OCD Action, is a mixture of CBT and, in more severe cases (like my mum’s), SSRI medication. SSRIs work by helping the body to retain more of the serotonin that it naturally produces, and they’ve been found to be effective in treating those with OCD, who often have significantly lower levels of serotonin than is considered normal.
Dr Eric Davis, a psychologist and OCD expert, believes that, while there is a genetic “leaning” for OCD, in his experience the “major contributory factor is environmental”. In a nutshell, he says OCD is about “trying to deal with anxiety and communicate stress by trying to control things. It’s about feeling out of control and trying to rectify these feelings.”
Dr Davis told me of his experience treating multiple members of the same family with OCD and said that, in some cases, family-based factors could make the illness worse. Examples of this would be when one person with OCD starts to demand other family members carry out enabling behaviour on their behalf. This is exactly what my mum got me to do when I was a kid, so it was interesting to hear Dr Davis identify it as something which makes the illness worse – not better.
I do get fed up with people saying they’re “so OCD” when they show off their gleaming white trainers, or explain why their vinyl collection just has to be alphabetised
The best way to help families that are struggling with OCD, Dr Davis believes, is through family-based clinical interventions. All the experts I spoke to agreed that there was a need for additional funding to help support the families, too – the children of people with OCD in particular. Sam Challis, a representative at Mind, told me that “there is a need for people with OCD who also have children to be given specialist help – for example, training in how to minimise aspects of their behaviour so they don’t pass compulsive traits onto their children”.
Unfortunately, against the backdrop of chronic government under-funding for NHS mental health treatment, the odds of getting specialist help within a reasonable timeframe are about as likely as seeing my mum hit the beach in a skimpy two-piece.
We might make some headway, too, if we stop representing OCD in our culture as just needing to have all your pencils sharpened, or being really tidy. I can’t lie: I do get fed up with people saying they’re “so OCD” when they show off their gleaming white trainers, or explain why their vinyl collection must be alphabetised. Professor Nestadt agrees, saying, “No one [really] knew what OCD was until Hollywood starting representing OCD in films and on TV shows, but even now people don’t really understand it.”
Having true OCD is not being able to give your daughter a hug on her birthday because you’re scared she’s dirty. As Challis says, “OCD is a very serious health problem which needs dedicated funding and support.” Because of my familial experiences, I knew this better than anyone, so I got help a lot quicker than a “normal” person might have done. As a result, I’m managing my condition very well.
But really, in the process of writing this piece and throughout my treatment, I’ve realised that it doesn’t matter so much to know how or from whom I developed OCD. Getting confirmation from experts that my OCD wasn’t necessarily my mum’s fault made me feel guilty for blaming her all my life. I know she feels guilty, too, for not having given us what she thinks of as a normal childhood, which is fucking stupid, really.
You can’t “blame” someone for having a mental health disorder – even when it’s frustrating trying desperately not to laugh when your mum is trying to kick a car door shut because she doesn’t want to touch the handle – any more than you can blame them for having hayfever or psoriasis. Because to feel guilty about something is to be responsible for it, and OCD is no one’s fault. It’s an illness, and one that can be crippling. But, crucially, with the right help, even if you’ve become afraid of sand like my mum did, it is very treatable.
If you are concerned about the mental health of you or someone you know, talk to Mind on 0300 123 3393 or at their website, here.
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