The Doubting Disease
Youíve locked the front door but what if you didnít? What if something terrible happens to your family because you didnít check it one last time ó for the 20th time? For sufferers of obsessive compulsive disorder (OCD), itís a tormenting stream of constant doubt. For the observer, a little consideration would not go amiss
Of all the statuses about obsessive compulsive disorder (OCD) on Twitter, it’s almost incredible how more than half are put up by people who assume they’re being quirky or cool by claiming they’re “OCD” — not even that they have it but that they are it. The phrase is thrown about so lightly by non-sufferers and the real deal still so stigmatised these days that those truly affected by the condition often prefer to keep their identities secret. Because the real deal, or the doubting disease as it is often called, leaves you feeling anything but ‘quirky and cool’.
In the case of UAE-based Trixie (name changed), it started with intrusive thoughts about people dying or getting hurt that were “distressing but mana-geable”. A couple of years ago, however, they turned into what is commonly known as contamination OCD — the obsessive fear that something is contaminated and may result in terrible consequences if the sufferer does not engage in exhaustingly compulsive washing rituals till they feel it is clean again.
Trixie’s rituals involved spending 2-3 hours in the washroom to take a shower, after having washed the entire bathroom, and washing her hands 14-15 times consecutively. “My back would hurt so much from having to lean over the sink for so long, constantly washing my hands. My skin was so dry and I had cuts on my hands from having used so much soap and hand sanitizer. I knew my hands weren’t dirty but the nagging thought at the back of my head asking ‘what if’ caused far too much anxiety.”
The anxiety could sometimes get out of hand too. “I remember cleaning my bathroom one time, and I couldn’t get it done ‘right’,” she recalls. “I kept feeling like it was still dirty and I was so exhausted, I was crying and almost on the verge of blacking out…” Trixie waited it out, thinking the phase would end but it kept getting worse. She lost eight kilos, couldn’t sleep and was constantly tired from performing all the cleaning rituals. That was when she decided to seek help and approached her university counsellor, who confirmed she had a classic case of OCD.
It’s been a combination of cognitive behavioural therapy (CBT), hypnotherapy, relaxation exercises and a gluten-free diet since, but she has managed to overcome most of these rituals and regain “some control” of her life again. She still harbours a strong fear of public washrooms — to the extent that she has to plan her outings around scheduled washroom breaks, and sometimes insists on coming back home during a trip just to use the washroom.
The therapy, however, has “worked wonders” and she feels seeing a psychologist in these circumstances is very important. “It’s a deeply emotional struggle [to visit a doc the first time] because it makes you feel like something in your brain isn’t working right. But I wouldn’t have been able to deal with this on my own,” she explains. “I simply didn’t know where to start. Just hearing my therapist say that it was okay literally took so much stress off my shoulders — because for so long, I kept thinking something was wrong with me and that I must be going crazy.”
Trixie’s experiences are why she gets so frustrated upon hearing people address the subject so lightly. “So many people think they have OCD just because they like keeping their rooms clean. And they often say it with a sense of pride and happiness. That’s not OCD! If you like being organised, that just means you’re an organised person. When being organised disrupts your life, that’s when it becomes a disorder. And when people say they have OCD because of such things, it belittles the disorder and makes actual sufferers seem like they are making a big deal out of nothing.”
It is this general lack of awareness of mental health issues that leaves her feeling “caged”. “I cannot openly tell people I have OCD and expect them to understand,” Trixie says. “I have been told to ‘just snap out of it’ or ‘take some pills and I’ll be alright’. That is not the case at all. At some of the places I worked, employers and co-workers seemed to keep a mental note of how long I took in the washroom, which made me even more anxious. The worst part was that I had improved a lot and reintegrated in society after therapy but such experiences led to a regress.”
Trixie is currently unemployed but says she’d feel more confident about going back into the working world if companies and people understood what OCD was all about. “I had big dreams about having a career but now struggle with the fact that I am now unable to work due to lack of support in the workplace.”
Dr Abdulnaser Arida, consultant psychiatrist at the American Center UAE in Abu Dhabi, sees about 10 new cases of OCD patients a month — yet they’re probably not seeing half as many as they should be because of the general reluctance of patients to get help. “On an average, diagnosis of the condition is usually late by about 10 years because the patient doesn’t think they have a psychiatric disorder or a condition that can be treated,” he explains. “Patients often reach the door of the clinic several times before going back home. It’s when they finally cannot tolerate it anymore that they finally approach us.”
Going crazy is exactly what Minnesota-based author Alison Dotson thought she was doing. For more than a decade, since she was 12, she admits to quietly suffering intrusive thoughts (“really shameful ‘taboo obsessions’ that you can’t really tell someone in polite conversation”) and having no idea what was going on. “I had sexual obsessions… religious obsessions… I thought I was a bad person… that maybe something was wrong psychologically but I didn’t think it was a disorder… just something I assumed I had to work out by myself.”
Alison’s ‘type’ — i.e. obsession with intrusive thoughts — is very confusing for those who suffer from it. The link to OCD is hardly ever made because they don’t exhibit the more visible signs of hand-washing or stove-checking, which is perhaps why it is called ‘pure O’. In other words, obsessing without the physical compulsions. “You hear ‘OCD’ and you already have a picture of what it means, in your head,” she explains. “I didn’t know who to talk to but perhaps if I had, I could’ve gotten it figured out sooner.”
Instead, the 34-year-old editor only got diagnosed at 26, struggling in private with questions about her morals and self. “My compulsions were in my head. I’d pray a lot, repeat things to myself, count the syllables of a conversation and ensure it landed on an even number to make me feel better about myself…” At times, there was respite, but they would soon be followed by more intense periods of obsession. “People would ask if I was all right, but it’s not something you want to talk about and you soon learn to put on your ‘happy face’ and lie, despite the depression.”
It’s when she got suicidal that Alison finally decided to get help and reach out to an OCD specialist. “There’s this fear of being judged or hospitalised in a psych ward... It took time for me to deal with this. Therapy is hard but getting through it is better than living with OCD for the rest of your life. I have coping mechanisms now and know what to do when obsessions do pop up. Being able to look at it through the lens of OCD made it easier too.”
The prevalence of OCD in the general population is between 1-2%, according to Dr Abdulnaser. “It’s not as common as cases of depression or anxiety but the onset is always due to a combination of a genetic predisposition and environmental factors, such as stress.” The disorder isn’t just about the compulsive washing of hands though, he clarifies, addressing what is possibly the most common misconception about the condition. There are so many different forms, including the compulsion of checking, intrusive thoughts and hoarding (“where one cannot throw away even trivial things like empty boxes, old newspapers or receipts dating 10-15 years”).
The way OCD affects the quality of a patient’s life is usually in the time taken to perform the compulsive rituals, he says. “I have a patient who spends at least two hours daily before bedtime, cleaning his room, arranging his clothes, cabinet, bed sheet, books… before he can sleep. Another takes hours to get ready for work due to repeat showers and rituals that involve dressing in a specific way (socks before trousers, right shirt sleeve before the left etc). If they miss something, they have to repeat it from the beginning and this can be very stressful for the patient.”
French resident Bellsie knows just what that feels like. When she was 15, one of her brothers was involved in a very bad accident. And though she wouldn’t say it brought about the onset of her OCD, she believes it did lead to her condition taking the form it did i.e. engaging in relentless counting and symmetry rituals for fear that someone in her family would die. “I gradually went from being chaotically messy to becoming neater and neater, obsessing over my school work and copying things out over and over again,” says the psychology student, now 24. “I began counting my steps, tiles on a mosaic floor, words in a sentence, pieces of rice in a bowl and anything else I could. I was scared of walking on the lines between tiles and would tiptoe everywhere. I stopped going to my German class all together because it was up a staircase made of tiny mosaic tiles and I knew it would take hours to get up it…”
Bellsie went from being a straight A student to not being able to finish a single question on an exam because of how long it took her to copy it down perfectly. It was only when she finally confided in her mother that she was taken to a doctor and officially diagnosed at age 17. Against her doctor’s advice, she decided to attend university and study medicine but had to drop out when the OCD worsened to the point where it completely “ruled” her life. “I had to phone my parents one day and tell them I just couldn’t do it anymore. I’d been trying all morning to leave my room for a lecture and couldn’t do it... That’s when my parents and I realised how bad it had become and we took the decision for me to leave university and come home.”
In the two years that followed, Bellsie underwent CBT and found a therapist and medication that worked for her. She re-joined university in 2010, this time as a psychology student (“I’m not sure my patients would appreciate me being late for their life-saving surgery due to having to check the door one last time or having to cut them open again to make sure that I really did do the opera tion properly the first time!”) — and is currently in her final semester.
She’s grateful for how supportive her family and friends have been through it all. “There is still a lot of stigma,” she notes. “People assume you aren’t as able as others, if you say you have a mental health problem, but I realised that we won’t get rid of stigma unless we’re open about our experiences.” And that’s exactly what she does on her blog (www.obsessivelycompulsivelyyours.wordpress.com). “It gets better,” she assures sufferers. “There is quality treatment out there and it is entirely possible to live a life that is not governed by OCD. It may be hard work but it’s absolutely worth it.”
Maryland-based Miriam Yarmolinsky’s obsessions are all about perfection. It’s hard for her to gauge exactly how much of her life the OCD takes up but she feels it especially when she is stuck with deadlines or has a public speaking engagement. “For instance, I am going to be doing a training this week that I am having anticipatory anxiety about; so instead I am vacuuming, cooking and scraping ice off cars so that I don’t have to work on dealing with the upcoming event,” admits the 48-year-old. “It’s a weird cycle — once I start vacuuming, I can’t stop.”
Her close friends, parents, and husband know about the obsessive loop she can get stuck in. “The obsessions are not always useful. They can be somewhat paranoid in nature or not logically helpful e.g., the bed absolutely has to be made or my day is ruined, I have to go to the gym or I haven’t met a certain standard, etc. For me, it’s about having trouble with perspective and the big picture.”
She was able to deal with the issues only once she started going to OCD support groups. “That’s when, slowly but surely, the experiences that I’ve had started to ‘normalise’,” she recounts. “I realised that I am not alone and there are many others who live with a lot of different conditions. It was almost refreshingly liberating to be around others who identify as mental health peers.”
Finding others like her was the catalyst to her eventually working in the peer industry too, says Miriam, who is founder of Peer Wellness and Recovery Services, an organisation that offers a variety of creative supports for adults with mental health and substance abuse challenges. To sufferers, she says: “There are people out there who are living, even thriving, with OCD, as well as other kinds of mental illness. Find peer support! Talk about it. It’s not your fault. Find whatever form of support you can because you deserve it.”
OCD does not mean the end of ‘normality’ nor are sufferers a threat to society. But if you need any more inspiration, consider the stars — Cameron Diaz, Justin Timberlake, Megan Fox, Leonardo di Caprio... All of them have been very vocal about their suffering with OCD in the past — but if you didn’t know they suffered the condition before reading this piece, it is a mark of how entirely possible it is to lead a normal life, despite the obsessive compulsions in your head that urge otherwise.