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I assumed that this OCD was too weird

It was June 27, 2018, and a Wednesday almost like any other. I had just gotten back from the gym, and I decided to sit down in front of my computer and watch The Joe Rogan Experience with dinner. He was talking to his guest about the new God of War game, and I was preparing to eat a new veggie burger I hadn’t had before.

I took the first bite, and my throat immediately went sore. I have pollen allergies, so I thought that the fresh ingredients in the burger must have triggered my allergies that, up until this point, had caused no serious problems for me. So I took another bite, and I took another bite, and I took another bite. My throat progressively felt  funnier, as did my eyes. This had happened once before, and Benadryl made me feel better, so I figured that was the solution here too. I ran to the nearby supermarket and went to the medicine section.

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Questioning Yourself, and Hubristic Overthinking

When I was eighteen, I started this relationship with a plucky, punky, quite typically teenage angst fellow eighteen year-old. Like a lot of teenage relationships, it was a questionable match, we had little in common and it was short-lived, the pair of us calling it quits shortly before I moved away to London for university.

Coincidentally, brought on by the unfamiliar surroundings of a daunting new environment, and having moved four hundred miles away from my home town, it was in these initial months that OCD began making a cameo in my day-to-day life. By the start of my second year, it had a leading role in my story.

However, after a few years of reflection, it’s finally occurred to me that the source of my OCD was not solely a substantial social, or academic shift; the people we meet and the interactions we have with others through our “outside lives” play a huge part in how we process, perceive and think about ourselves in our “inside lives”.

Around two to three weeks before I moved away for uni, I get a text. It’s from a close friend, we’ve known each other for countless years throughout school and college, and she’d been encountering her own severe issues with mental health for a number of months. As a rule of thumb, if a friend with mental health problems contacts you at one o’clock in the morning and says that they’re feeling “a bit off”, you should give them your full, undivided attention. We agree to meet up the following evening to have a chat about what she’s going through, and after a few drinks, she makes a tipsy, ill-advised pass at me. I tell her that, even in my own woozy and blurred state, it’s a terrible idea, we both in turn laugh it off, and I leave.

The following morning, I woke up in what felt like it wasn’t my body.

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I am growing, and so are you – Finding beauty in OCD growth

My story makes me a little frustrated to think about, being that I didn’t get diagnosed until I was 19 years old.  I have struggled with cleanliness OCD, HOCD, harm OCD and currently ROCD.

I grew up doing all kinds of physical compulsions, but didn’t know it was OCD. For example, I would check under my bed and in my closet every single night until I was 14. I knew nothing/no one was in there, but for some reason I felt inclined to keep checking. There was something about the unknown of a door and a sheet that kept me checking. I went through a season where I would wash my hands so many times that they would bleed, and my parents had to make me wear gloves with Vaseline in them to stop the bleeding.  But these weren’t the things that made me think something might be wrong. They just seemed like normal kid things to me.

When I was in high school I always thought I was just too focused on what people thought of me, but in reality I was obsessing about it. I would get fearful of opinions, and go to great lengths to make sure people liked me or that they approved of what I was doing. I would spend hours every night scrolling through comments on Facebook, or tweets on Twitter to make sure no one was talking about me, even though there was no reason to.  I knew something was off. It was like I couldn’t stop. I knew other people worried about this kind of stuff, but for me it would get stuck. I knew it went way past the normal self-esteem issues, but I did nothing about it until I went to college. That’s where it escalated.

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A human mental health issue

My parents shunned any type of conversation about sex. In fact, I have never seen my parents kiss even and probably saw them awkwardly hug a handful of times in my life. I lived a very sheltered upbringing. In fact, I’d purposely take off my contacts in High School health class so I wouldn’t see the board or occupy myself in a book in the back of the classroom. I didn’t want to know anything about sex. As a Muslim, Pakistani American born and raised in Connecticut and a Hijaabi (I wore the head scarf out of peer pressure from the girls at the Mosque) at the time, I had no intention of engaging in sex because it was shunned. Even at the mosque, we were separated from the men and if I saw a boy, I would lower my gaze and he’d do the same. My only interaction with boys were my cousins. And in Islam, we are allowed to  marry our cousins. When I hit puberty, I started falling for my cousin. I looked forward to weekend family gatherings just so we could chat. I felt intense emotions for him that I can still remember feeling. A handshake was everything. Perhaps this is why sex has been the biggest taboo and the biggest part of my OCD in my life.

When two lesbians were invited to be guest speakers in my 10th grade health class, I got curious. As I listened to them talk about coming out, it hit me. I looked at the girl sitting in front of me. She had a tight shirt on and her small waist looked beautiful. I fixated on that waist and it was my very first trigger into my HOCD. From that moment, the entire world flipped upside down, like I was really in the upside down (Stranger Things reference). Every woman, even my own mother made me spike. A spike is a strain in my body, like in my stomach and vagina (I still don’t know what it really is). My favorite Bollywood actresses made me spike. A beautiful voice singing, siri, an operator, the Doctor’s secretary all made me spike. What was going on? I was surrounded by women everyday and it felt like hell. I couldn’t look at them. I was analyzing them. Do I like them? Do I want to be with them? So I wanted to avoid them, isolating myself and wanting to stay home and not even go out in the world.

Before this, I only ever imagined to be with my male cousin. I thought I was in love with him. And this whole time I felt so alone, unable to express any of this to anyone. It was so embarrassing. So, I called a gay hotline that I found online and asked them what was going on with me and they made it even worse. Their triggering words were ‘You just haven’t let yourself like a girl yet, just try it.’ I remember playing badminton with my sister and suddenly fell to the floor in a massive panic attack. I told her everything. She comforted me, telling me that even she thinks about women sometimes. These words gave me ease. It was my first compulsion. I don’t remember when it disappeared but it did. Probably because my OCD content shifted to ‘weight OCD.’ I then fixated on my body. But I’ll get to that in a bit.

My HOCD came back in full force at 19. It was like the devil. I started googling ‘gay Muslims’ to find out if this was even okay as a Muslim. I found Faisal Alam, a gay Muslim activist who founded an organization for gay Muslims. I started to talk to a gay muslim man on Faisal’s forum group, and he told me that I wasn’t actually gay. Again, a sigh of momentary relief. I finally found a therapist. I don’t even know how I had the money for it. He was in Connecticut. He was an old white man. My first thought was, ‘how is an old white man going to understand a young, South Asian Muslim girl?’ I was so nervous that he’d tell me I was a lesbian and my life and my dreams of a husband and kids would be shattered. He gave me reassurance instead. He told me being gay or straight was a choice and that reassurance helped for a bit. I would continue seeking reassurance from him and he kept giving it to me, unable to truly resolve my real problem, OCD.

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My post partum OCD

It’s a girl! A little girl, she only weighs tiny even after being a week overdue. That long awaited week of doing everything I could possible to get her out because I was so eager to kiss her!

My husband was asked to leave the hospital room that night and I was petrified. But had no idea why. Due to my birth and baby coming out so quick, she had ALOT of reflux. So with her laying in her bassinet, and all I felt like was sleep after an 18 hour labour and a birth that could have potentially been quite scary that’s all I wanted, was sleep. Yet all I could hear was my little baby spewing up this yellow reflux. So I popped her on my chest in the hospital bed to try and get some rest. Then within an hour I have a nurse coming in so abrupt ‘we do not sleep with babies on our beds because they can roll off and die”.
I would say this was the beginning of my Post Partum OCD hell.

The next day, I checked myself out with my husband, my first baby and my sister in law.
The first week is such a blur and I still could hardly sleep. Fearing that if I went to sleep I may die, or that I have this new baby and I could kill her. Not on purpose. Or maybe on purpose. I don’t know?

I remember all I wanted to do was to get back into my routine, taking my dogs for daily walks around our beautiful reserve which had a lake, cooking dinner, driving with my new girl in the back seat, being so happy just like I was before I had her. Instead I was riddled with intrusive thoughts 24 hours a day. They were the first thing I woke up to and the last thing I thought of before I went to sleep.

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OCD is a superpower

Many of those living with OCD can trace their mental health lineage back to a moment, or at least a vague, indiscriminate period, when Obsessive Compulsive first became a problem for them. It makes its grand debut in a loud, emotional, difficult to navigate, and all-round shitty opening number.

Perhaps not a specific point in time when Obsessive Compulsive reared its ugly head and strode with confidence and swagger as an unwelcome guest into their lives, but at least an inkling in retrospect of how and why those three letters came to leave such a stamp on how they live today. I, however, am not one of these people. I can’t tell you why I am obsessive, there is seemingly no explanation why I have to satisfy my compulsions, other than the unnerving feeling that aspects of my environment need to be “just right” in order for me to feel comfortable. “Just right” – I feel like OCD sufferers should have that slogan printed on business cards.

While I can’t explain where, when or how I’ve found myself where I am today and as a proud member of the mental health community, I am very aware of the social factors which have lead me to this point in my life.

At the age of six, every child in the UK is dressed in a formal shirt and tie, top button tightly done up, backpack buckle fastened, shoes polished, blazer ironed and generally made to look like they’re sweaty, middle aged businessmen commuting into work on the tube. We then spend the next ten years teaching children, teenagers, young adults what success looks like. We explain that hard work leads to good grades, that academic excellence then leads to a well-paid occupation, that job leads to career ladder progression, which all in turn leads to money, friends, family and happiness. We tell students to sit up straight, to stand up straight, do their top buttons up, adjust their ties – we even give them a uniform.

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Wedding Bells or Alarm Bells

I thought I wouldn’t write this until I was recovered, but I realized that “recovery” isn’t an end point; it’s learning to manage every day. For anyone wondering, I will state, up front, that I still don’t have “answers” to my OCD questions. But recovering is being able to accept that fact.

My OCD didn’t come to a head until I got engaged. It was supposed to be the happiest time of my life, right? And yet, I felt trapped in a nightmare for months.

But before that happened, I believe my first signs of OCD were in high school, and I had no clue that’s what it was. I was a lover of romantic comedies and silly romance novels. I felt a desperate need to be in a relationship and probably thought about boys constantly. You see where this is going right? Of course, OCD latched onto relationships.

Despite the fact that all I wanted was a boyfriend, dating brought on intense anxiety for me. What if I was awkward? What if I didn’t know what to do? What if he wasn’t right for me? What if our friends judged us?

This continued through college, obsessing about boys and relationships constantly, but also being overwhelmed with anxiety when anything became slightly serious. If my compulsion was breaking things off, I gave into it every time.

I also spent inordinate amounts of time thinking about what was wrong with me that I couldn’t make a relationship work. I agonized over it, cried over it, and seriously questioned myself worth.

Then my OCD took another turn. What if I couldn’t make a relationship with a guy work because I was actually gay?

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OCD Realization the long story

When I look back, OCD had gotten its sinister hooks into me when I was a teenager and was fully eating away at what confidence I had. I had no idea why I would continuously check things or make sure I at least looked presentable to be in class. I was heavy into cannabis and alcohol back then and when I later became an adult I would blame my youth for causing me to feel this away I became strongly anti-drug in my 20’s in the last few months with the dawn of legalization in my country (Canada) and some input from my Psychologist I realize that this was just placing blame and that alcohol and drug use is generally typical adolescent behavior to a degree. In all truth the drug use didn’t make me have as many bad experiences as alcohol.

If you want to know the recipe for destroying a young mans self esteem it goes like this some social rejection, failure and sadly hairloss when I think about the last one and having a shaved head now it feels so trivial but at the time it felt devastating in high school.

The self esteem issues causing OCD had led me to have jealous and judging tendencies with the opposite sex both in my teens and has returned fully even now in my mid 30’s despite being married for a long time. The OCD has pushed itself into ROCD right now truly a nightmare in the darkest parts of ROCD you start to wonder if you would be better off alone rather than inflicting pain on the one you love most and the rumination trap your own mind falls into. The ROCD is going to be something I bring up again during therapy yet again this week. Hearing from my wife about my jealousy and issues fills me with shame and guilt as this feels so different than who I want to be as a person.

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Life Along the Path of Obsessive Compulsive Disorder

I can vaguely remember a time when “it” wasn’t there.  The “it”, which for twenty-two years, I didn’t know actually had a name.  Somewhere around age seven or eight it set in.  (“Did it follow a strep infection?” I would be asked decades later by a doctor, but I couldn’t remember by then with certainty.) Slowly, but very definitely, my mind began to work against me.  It was confusing and became terrifying.

My first unwanted impulse was to constantly clear my throat, much to the annoyance of my family and those around me. Settling down to sleep at night was overwhelming — “Mom!  She’s doing it again!  She won’t stop,” cried my younger sister who had the misfortune of sharing a bedroom with me.  I would fight the compulsion each night sometimes for an hour.  The next compulsion which presented itself was the urge to roll my eyes up and back.  Some people asked what I was doing, but I couldn’t explain that not doing so filled me with incredible anxiety.  I would repeat the action so many times in a day that my eyes began to ache tremendously. I hated this; but it was as if a demon in my head was telling me notto do so would result in a greater discomfort.

Listen to Julie’s story here

“Is the muscle not tight enough and that’s what’s happening?” my mother asked anxiously. I didn’t know how to tell her that I did this eye-rolling willingly, yet at the same time against my will.  When I heard Mother mention to Dad that perhaps they should take me to a doctor, I got nervous and was careful never to perform the action when my parents were in the room.  One by one my strange compulsions came, usually for an average of about three weeks at a time, and each self-aggravating compulsion only left upon the arrival of a new one.  I never got a break in between.  As suddenly as one visited me, it would leave but only when something equally or more vexing took its place.

Another urge which overtook me was to momentarily shake my head.  It was as if I was tossing my hair back — except that I had short hair.  I did this so many times in a day that eventually my head ached with each twitch. Still, ignoring the urge left me thinking of nothing else but repeating the action!   And thus the endless cycle of responding to the relentless demands which my own mind placed upon me was well established by my ninth birthday.

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Keep strong. It gets better.

My first experience with OCD was denial and dismissal. It was not in any malicious way. As it so often is, it was a result of ignorance about OCD. When I was 12, I found religion. In finding God, I also discovered the “unforgivable sin”, blaspheming the holy spirit. I’m sure any Christian with OCD knows this well. I suddenly began to get thoughts I’d never had before. I hate the holy spiritthe Holy Spirit isn’t real and a variety of obscenities about the Holy Spirit. I was terrified. Then it began to spread, this monster. Whenever I heard of terrible stories of people dying I would be attacked by thoughts along the lines of Good, they deserved it. To this, of course, I would react hotly and repeat lines like “No, I don’t think that! That’s horrible!” Then the doubt. Do I think that?

It was through Christian forums that I discovered religious OCD. At this point I felt enormous relief. Then it changed. I became concerned that I was sexually attracted to my next door neighbours (who were six). I would feel a compulsion to check that there was no bodily reaction shall we say.

All the while I heard people say that OCD was “liking cleaning” and “ordering things in lines”; it was just a harmless personality quirk. It makes me wonder how many other people are in agony out there wondering if they’re perverse because they don’t think what they’ve got is OCD. People are supportive and well-meaning, they just have no idea what OCD is.

When recovery began, it happened phenomenally quickly. After three years of on-again-off-again rumination and intrusive thoughts, it reached its climax. Over the summer after GCSEs, I fell in love with an incredible girl, a ballerina. Almost immediately my head went for this girl. The thoughts became less obviously OCD, but the mechanism was still there. The thoughts went for the fact that she’d lost her father at a young age and picked on issues around the world (the rape of Yazidi slaves by ISIS, for instance) and showed her in this situation, in some attempt to make me feel guilty. It was strange, but that’s what OCD is.

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