What it's like to have OCD - interview
Updated: Jan 30, 2021
Hello everyone! Hope you all are keeping safe during these tough times! Mental health should never be compromised and it is very important to take proper care of our mental health. I have interviewed Ms.Charlotte who has a keen interest in English Literature. She talks about her experience with OCD (Obsessive Compulsive Disorder).
I’ll be interviewing my best friend who has done substantial internships in the field of mental health. Till then, take care of yourself and others! - Dipeeta Das Mukherjee
When were you diagnosed with OCD? I was first diagnosed with OCD in February 2017 when I was doing my master’s degree. It was my second round of CBT for what was then labelled ‘persistent every day worries,’ which baffles me now because there is nothing ‘every day’ about the things OCD makes you worry about. As it was my second round, it was labelled ‘high intensity,’ but it was through something we have in the UK called IAPT (Improving access to psychological therapies, I think) which sadly remains a one size fits all rigid treatment plan of 6-12 sessions of CBT.
This kind of generic therapy I’ve found can be so dangerous for people with OCD because a lot of the CBT homework they assign you is a compulsion in itself - don’t get me started on the worry tree. That compulsion still exists today thanks to those sessions and is one of the hardest ones to stop doing for me. As you can tell it wasn’t a helpful experience for me and so I largely ignored the diagnosis at the time and stopped attending sessions. I was then re-diagnosed in January 2019 by a psychiatrist through a community mental health team. This kind of treatment base is a huge step up from IAPT and is so much more tailored to the individual. The sessions are unlimited and you get to see a psychiatrist and a CBT therapist who specialises in OCD. I am so incredibly lucky to have been referred to this service. I had to sit through two rounds of CBT and two rounds of counselling before I even qualified to be considered. Every single one of these therapists said there was something wrong with my anxiety that they couldn’t figure out, and I was pretty much passed from person to person with different medications for 6 years. Then I moved home from University and started seeing my old family childhood doctor who sent me off for psychiatric assessment. I was considered and rejected, sent instead to a Community psychiatric nurse, who immediately knew what was going on and demanded I be sent to a psychiatrist. What angered me was that I told them the CBT therapist said I had OCD, but nobody listened to me until I saw the psychiatrist because I ‘didn’t rearrange things to make bad thoughts go away.’ Once I saw my psychiatrist for the first time, everyone had a lightbulb moment and realised how misunderstood OCD was.
I get frustrated if I think about this too hard but ultimately I know the average time it takes to get OCD treatment is something around 14 years, and it only took me 6 from the time of first seeking treatment. For this I am immeasurably lucky and grateful. My OCD is classified as ‘purely obsessional,’ a label that I hate. OCD is a spectrum disorder between obsessions and compulsions and this doesn’t reflect this. I prefer covert (obsessional) vs overt (compulsive) OCD. This probably isn’t even entirely accurate, but it’s just my way of understanding my form of the illness. My umbrella themes are an inflated responsibility, decision making, and contamination, and obviously there’s loads of more precise ones that come under them, sometimes both at once.
Did you notice any symptoms/were you aware of the disorder? I firmly believe I have had OCD my whole life but for a long time I harboured the same harmful stereotype that prevented me from getting help where I couldn’t possibly have OCD because I didn’t do things like compulsively wash my hands or rearrange stuff on my desk due to nothing but ignorance about the disease. Rather, I have covert compulsion OCD. Lots of people use this as a compliment by saying ‘oh well if it helps I never would have known you had OCD until you told me,’ which is annoying. I’ve always had the symptoms but ultimately had no idea what they were and because I couldn’t remember life without them, I sort of assumed everyone was the same until I went to University and realised they weren’t. Sometimes I get sad looking back and thinking about my younger self because the signs were all there and maybe if I’d spoken up sooner I would have gotten help so much quicker.
My earliest memory of a compulsion is when I was six, and I had done something inconsequential at school that I thought made me a terrible person, and so I had to confess to my mam or else I’d go to hell. I grew up in a devout catholic household which is why I assume these early compulsions were religious themed, and this compulsion continued for a long time. I even still do it now, despite being an atheist. As I got a little bit older, they became more scary. I would check my body until bruised searching for signs of cancer. One time when I was 14 I convinced myself I was being stalked by an all you can eat buffet restaurant and thought they were recording me and live-streaming my every day life on the internet. My compulsion for that one was that I had to eat at the restaurant once a month so I didn’t anger them. I was convinced from the age of 9 that I had HIV. There were lots of physical signs too. Pretty much throughout my entire teen years I was tested repeatedly for heart conditions, circulatory diseases, and stomach problems; in hindsight I think these were physical manifestations of anxieties I didn’t know I needed to talk about. Obviously these are just the earliest ones - there are so many now I wouldn’t have time to list them all! What was the reaction you received from others when they got to know about the disease? As sad as it is, I think I probably speak for a lot of people when I say that those closest to me family-wise took it the hardest. I think my parents went into defence mode because I had a happy childhood and a happy life, so how could I possibly have this psychiatric illness? I think they thought I was being a bit dramatic because I didn’t have any reason to be so poorly - I just was. My friends were nothing but supportive from day one, as were my co-workers. I think it sunk in for my family when bsessions and compulsions. I obsessed over it and did so many checking compulsions that I had another partial seizure in a meeting at work, and lots of little episodes that presented as focal seizures. The problem was we couldn’t tell if they were panic related or not, and they formed and triggered a lot of compulsions I’m still grappling with today. Once I saw the neurologist however, all of those episodes stopped immediately, and so it was definitely panic. Whether it was panic manifesting as similar to seizures (which can often happen) or whether they were psychosomatic I’ll never know. A good lesson in uncertainty, I guess?
How were you treated? Initially, I wasn’t treated well by certain people closest to me. As much as I don’t like to admit it I think I still hold a little bit of anger towards certain family members because of it. They would say things to me such as ‘why do you need a psychiatrist when you have nothing to worry about?’ Clearly they knew nothing of OCD because we all know that OCD loves to mould something from nothing. As I said above, its gotten better since the seizure, but I know that that belief is still there in some of their minds and I’m trying to accept that you can’t convince everyone and you just have to accept that there are better things to put your energy into. My mam was very much a perpetuator of the harmful stereotypes about OCD, but since the seizure has been amazing in her understanding about it all. There’s thankfully little to say about my friends because their treatment oozed nothing but love and support from the beginning - so wonderfully unremarkable and mundane a response that there’s nothing to say about it.
What activities did you pursue while your treatment was on? This is a difficult question because for most of my independent adult life I have been in treatment, and I’m hoping this current one might be the last! Because of this I don’t have a before and after to compare, so it’s pretty much stayed the same. I go out with my friends, go to work, go on holidays, do things I love such as reading and swimming. Two years ago I travelled across the USA from San Francisco to New York through the southern states in a van which was the best experience of my life. My OCD hasn’t stopped me from doing lots of things, which I think is partially why some people can’t believe how poorly I often am and think I’m making it up. But they don’t see all of the things I want to do but can’t because of it, and all the things I’ve missed out on because of it. Sometimes the reason I force myself to do all the normal things I do is actually a compulsion in itself. Are you fit now? No. I don’t think I ever will be. I really hate the dialogue about beating OCD and ‘recovering.’ In other mental illnesses I think its a great mindset to have, but OCD is slippery and makes its own rules. I don’t want to beat OCD, I don’t want to recover. For those with OCD, we will have it for life, even if we don’t have symptoms at present. The dialogue of being able to recover can make people complacent, which only makes it more likely to get bad again. I prefer the addict conversation about recovery. I am definitely addicted to my compulsions, and so will forever remain in recovery. I have talked about this with a friend of mine who is in recovery with an eating disorder, and she says the same things. The compulsive behaviours we preform make us feel good, which is why we do them, and I really want people to acknowledge that. I want to switch the conversation from beating OCD to making friends with it. I think the best way to deal with it is to recognise triggers and themes and distorted thinking and know how to live in harmony with them all so that they don’t blow up into a debilitating form of OCD again. Your reflection on your experience I grapple with wanting and not wanting to control my OCD. I firmly believe that it is partly why I’ve been successful at things and it makes me be a better person. Obviously the argument is there that I am not my OCD, but again, I have had it my whole life and don’t know what it’s like to not have it, so I don’t really have a sense of self without it. I know lots of people in the mental health community would be horrified at me thinking that, but it doesn’t bother me at all. So for me personally, my current aim with my therapist Sarah is to figure out a balance between my OCD and me, and create a symbiosis between us. There are certain compulsions that don’t bother me and don’t impede on my life or standard of living. There are also certain compulsions that are necessary. A great example of this is the current Coronavirus pandemic. Before all of this, my brain would say if I didn’t wash my hands before doing X, then Y would happen to someone I care about (side note here, growing up catholic this was a nightmare when having to do the sign of peace during mass). Before, in therapy I would have worked out ways to undo the hand washing compulsion, but now everybody has to do it to save lives! The pandemic is weird in itself for me having OCD. In many ways its business as usual for my brain and sort of surreal seeing people think the same way as me for once, albeit with a real threat as opposed to an imaginary one. Any tips for other people who might be suffering from OCD Fight to be heard, fight all the people who say ‘I’m so OCD because I like to clean and want all my tablets to face the same way in the blister pack,’ fight all the people who tell you that you have no reason to be poorly, and fight anybody who tries to tell you that medication is the cowards way out. That stuff is literally the scaffolding that holds the building up while the builders fix it. Also, its okay to have bad days! It’s okay to have days when you perform compulsions constantly. Your brain is making you do this because it thinks it will keep you safe and is trying its best - please be kind to it. Anxiety of all types serves an evolutionary purpose. It’s just about trying to make sure it doesn’t expand beyond the borders of evolutionary advantage. What do you wish you knew about mental health? Speaking from my OCD-induced aversion to uncertainty, I would like a full and detailed description of why I am the way I am and why my brain thinks the way it does. When I die, I have made plans to donate my brain. I’ll never know the answer, but maybe I can help someone else work it out? What help did you get from your workplace/society apart from medical professionals? Nothing but absolute love, support, and curiosity from my workplace. Never once have I experienced any form of stigma and judgement from my colleagues, which is incredibly rare. The curiosity especially makes me happy. I don’t know how I got so lucky, but I remember I had to go into work immediately after meeting my psychiatrist for the first time and receiving that absolute OCD diagnosis and detailed treatment plan. I had to tell my boss about it and ended up sobbing to him in a tiny room in the station. The things he asked me where 1. Was I okay? 2. What could the organisation do for me so that I could still do my job in spite of my OCD? And 3. Did I want a cup of tea? Since the seizure, I’ve been unapologetically open about my OCD because it is so misunderstood that people get awkward about it. My logic is that if I’m not awkward about it, then people will mirror that and know it’s nothing to be cautious of. I’m going to have that mindset for the rest of my life now, because my OCD has taken so much from me but people - particularly my co-workers - now only ever have curious questions to try and understand OCD a bit better. And I like to think that maybe I’ve taught 16 people not to use the phrase ‘I’m sooo OCD,’ which means that there’s 16 less people walking around with the unhealthy stereotype of OCD that prevents so many people getting the right treatment when they need it.