Break the Stigma: The Many Faces of OCD

“I remember wanting to go to sleep and never wake up. I felt as though my internal world and external world were two completely different places.”

Obsessive-compulsive disorder (OCD) is a mental illness I know all-too-well — one I was diagnosed with at the mere age of 6 years old. And while there are a million reasons why I wish I didn’t have to live with such a relentless demon, there are a few solid reasons why I’m actually glad I do — including the fact that it’s brought me closer to the people in my life, especially those who also battle OCD.

I met my friend Milly through Instagram’s OCD community and instantly knew we’d become good friends, despite the fact that she’s from New Zealand and I’m in the U.S. I admired her willingness to share her struggles, and she has unknowingly encouraged me to be more open and communicative with others.

I found it was inspiring how, despite her brain being wired against herself the way mine is, Milly moved overseas to Australia when she was only 17 to train at a full-time ballet school, then to the U.S. where she danced for three years. She’s now studying at Auckland University back in NZ, where she plans to earn her BA in psychology and criminology, her goal to become a clinical psychologist specializing in OCD.

Needless to say, she doesn’t let her disorder hold her back from living. However, that doesn’t mean she hasn’t struggled along the way.

“Throughout my childhood, I always felt quite different,” Milly told me. “I didn’t understand why I was having so many weird and scary thoughts, and why I had to perform certain behaviors or rituals. All I knew was that I couldn’t stop them.”

Looking back, Milly recalled experiencing stereotypical OCD symptoms, such as compulsive actions she had to do to prevent “bad” things from happening, like praying a certain way to avoid her irrational fears.

However, later in her childhood, she began experiencing “Pure-O,” or “Purely-obsessional OCD,” a subtype of the disorder that involves distressing thoughts combated by mental — rather than physical — compulsions. Examples of such rituals include ruminating, reassurance-seeking, avoidance, memory reviewing, and more.

“In these instances, OCD will usually latch onto the things you hold closest to your heart,” Milly explained. “People can have violent intrusive thoughts or false memories about harming people, hurting children, doing bad or inappropriate things, accidentally or intentionally doing things that harm themselves, their future, or their reputation. They can have excessive doubts, usually in the form of ‘what if’ thoughts, or intrusive thoughts and mental images that are totally ego-dystonic.”

In particular, Milly’s false memories became extremely difficult to cope with. At one point, she faced them daily; they were all her OCD would allow her to think about.

“It was awful, because OCD took away my ability to differentiate intrusive thoughts from real memories — and these intrusive thoughts were so vivid, distressing, and graphic,” she said. “I remember wanting to go to sleep and never wake up. I felt as though my internal world and external world were two completely different places.”

Essentially, Milly’s amygdala was in a constant state of misfiring, meaning it was misinterpreting non-threatening stimuli as life-or-death dangers. When these OCD episodes were triggered, Milly would experience a distinct physical sensation in her brain, which she likes to refer to as her “OCD Feeling.”

“It feels like a very intense pressure or buildup in my head — a really uncomfortable feeling that usually doesn’t go away until the intrusive thoughts lessen,” she told me. “When I’m in the middle of an episode, it feels as though I have no control over my thoughts. I get stuck in a place of metal rumination, trying to escape the intrusive thoughts or reassure myself that the false memories are just that.”

However, Milly explained, no matter how much you fight the OCD, it’s never enough. In fact, the OCD thrives off your constant rebuttals, always demanding more.

“It wants absolute certainty that I am ‘safe,’ but I can never give it what it wants, because it will always find a way to convince me otherwise,” she said.

Because she’s moved around so much, Milly’s treatment has been inconsistent, hindering her recovery at times. In fact, some of her experiences in therapy have done more damage than good.

A common issue for OCD sufferers is the infamous misdiagnosis, often the result of the stigma of OCD. In Milly’s case, this came with the label of generalised anxiety disorder (GAD), another mental illness that, while similar to OCD in terms of overall worry and quality of thoughts, requires much different treatment.

Naturally, Milly made little progress in therapy for GAD; and after some research, she was able to self-diagnose herself with OCD, but didn’t receive the official clinical diagnosis until much later.

Eventually, she sought treatment for OCD specifically — but it wasn’t all uphill from there.

“I’ve had some good treatment — Cognitive Behavioral Therapy (CBT)/Exposure and Response Prevention (ERP), as well as talk therapy and counselling — but also some very harmful treatment via Skype from an individual who I later realized was completely unqualified and unethical,” Milly told me. “As a result, I believe very strongly in advocating for measures to be put in place to prevent this from happening to desperate and vulnerable OCD sufferers, who might be willing to accept help from anyone.”

Milly recommends researching before beginning treatment, inquiring about licensing, qualifications, and the therapist’s background.

Throughout her years of treatment, Milly has found the most comfort in talking through her intrusive thoughts with a trusted loved one who knows both her and the complexity of her OCD, as well as writing in her blog to escape her mind and view her thoughts from an objective perspective.

“As my OCD became more severe, I actually became more extroverted,” she said. “My head often isn’t a very nice place to be. So being around other people makes me feel safe and happy. Often, OCD can make me quite low in energy, so I get my energy from others — when I feel comfortable, I love people!”

Additionally, dancing is another powerful outlet for Milly, allowing her to be expressive and creative. However, as it does with anything you love, OCD began to attack her passion for ballet as well.

“Dancing professionally whilst trying to manage OCD was extremely challenging, mentally and emotionally — I was often very frustrated with myself,” she said. However, “I love contemporary, because there’s not really a ‘right’ or ‘wrong’ in the same way as ballet. So, the sense of freedom you can sometimes find is very liberating.”

Overall, Milly said, it’s crucial to find your passions and your people. It’s easy to slip into isolation, but identifying your outlets and using them as ammo to fight through the bad days will make all the difference.

“Stay inspired, because OCD fighters are some of the kindest, bravest, most loving, and intelligent people I’ve ever met, and they have so much to offer the world,” she said. “Your OCD voice will try to convince you otherwise, but you have to learn not to listen to that part of your brain. Remind yourself that living with mental illness doesn’t mean you can’t be incredibly successful and happy.”

However, that doesn’t mean your journey to recovery will be easy, or that you won’t relapse from time to time. Recovery is not always a paved road with beautiful scenery.

“It’s going to be hard,” she said. “Some days, you might struggle to do simple things, like getting dressed or having a shower or concentrating on a conversation. Some days, you might cry a lot, or be very angry at your brain. But I can promise you, these extremely difficult times make the highs feel so incredibly special — in a way you only experience if you know what it feels like to live with a brain that isn’t kind to you.”

Want to help #BreaktheStigma against mental illness? Contact me to share your story!

One thought on “Break the Stigma: The Many Faces of OCD

  1. I appreciate this so much-I am a survivor of postpartum OCD which then opened my eyes up to the rituals and pure O thoughts I had before becoming pregnant. It is exceptionally scary to be utterly powerless to your own brain, which is actually trying to protect you-such a weird thing, the brain.

    Like

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