Dealing with Uncertainty - what it's like living with OCD

Living with OCD is something I recently came to a realize. I also thought that might be helpful to share. When living with OCD, it highlights the sneaky way we can sabotage ourselves. Living with OCD is so sneaky because it feels like we’re really just trusting our own intuition and experience. But really just trying to keep everything the same because, to our nervous system, “the same” is safe. But as I’m learning, living with OCD adds a whole other layer of complexity to everything. While, living with OCD I’ve had to navigate constant battle between seeking control and surrendering to intrusive thoughts.

Let me tell you a story:

I’m sitting, staring at my computer screen. I’m wrapped up in a blanket on my couch desk with Selenite, our white cat, snuggled against my knees. Takoda, our dog, sleeping…okay snoring…beside me. I just got off an initial intake call with a therapist who specializes in treating OCD. There are oh so very many emotions running through me:

  1. Absolute terror and the sense of impending doom.
  2. Pragmatic interest because the sense of impending doom is a medical term that I learned about in my nursing degree. That I was always curious to know what it actually felt like – and now I know.
  3. Pride because I just did something really hard and I made it through by trusting the process.
  4. And grief.

Grief in the realization that yes, indeed this thing you’ve been struggling with…

…this thing that would make you an excellent writer for serial killer murder shows…

Something that creates the most horrific thoughts, visions and dreams…

…this thing that you doubted was even OCD in the first place. This is despite two separate extremely experienced psychiatrists confirming the diagnosis…

It. Was. OCD. It. Is. OCD.

I, Avery Thatcher, have OCD. I have the Harm OCD Victim subtype and it’s okay.

 

Accepting my OCD Diagnosis

It took me over a year to fully accept that this was actually MY diagnosis. Although on some levels I suspected it, I think a part of me really didn’t want it to be real.

Even after those two extremely smart psychiatrists both agreed that I had OCD, I still doubted if it was. I didn’t have compulsions like running around and checking to see if the doors were locked or such.

I decided to “humour” everyone and try a therapy appointment. After one session with this self-proclaimed “OCD nerd” of a therapist, well, I couldn’t dispute the diagnosis anymore. It was clear what we were dealing with.

All of these emotions and grief were crashing down around me. While I was sitting there on my couch-desk. For the first time in a while, I couldn’t create a plan. I didn’t know the next step. I didn’t know the way out.

The Internal Tug of War

Truth is the stress and anxiety management strategies I use regularly to help me find stillness in the chaos of my life could actually be working against my OCD brain.

It kind of feels like I’m standing in the middle of a path, and have ropes pulling me both ways. Both ways serve me in one way, and sabotage me in another. This abstract recovery plan is…well…a little uncomfortable for me.

Scratch that – it fucking terrifies me. Uncertainty like this is not something I deal well with anymore…if I ever did. This past week has led to a lot of reflection on why I chose to work in the ICU. A super controlled environment perfect for someone with anxiety to feel at home but that’s another story.

I like me a good, solid plan. At the very least if I can have ideas of what the first steps will be, then I feel better. I bet you can relate. Especially if you also have anxiety or perhaps have been a high functioning anxious person like I’m starting to suspect.

 

Embracing Uncertainty in living with OCD

So, I’ve been sitting in this ugly, goopy, frustrating, scary sludge of uncertainty for over a week. It’s helped me become aware of a few things:

  1. I struggle with the idea of trusting. That it’s all going to work out, because, in my experience, it will work out to include new health problems. Diagnosis, struggles, tears, and more grief.
  2. My hyper-independence that I’ve learned over the years makes it hard to be guided by someone else. Like by two psychiatrists and a therapist that have more experience and a better idea of what is going on.
  3. I already saw these two things play out in my acceptance and learning how to best support my chronic illness. My disability, myalgic encephalomyelitis, and that means that I already have a bit of a roadmap. So the light of hope is there somewhere even if I don’t know which direction it’s in.

Uncertainty for me has always been difficult, because for me, uncertainty has a history of being unsafe. When I feel unsafe, I want to control as much as I can. That gives me a sense of safety.

Which is likely why I really like meditation, yoga asana, pratyahara mindfulness, pranayama breathwork. They all help me feel in control, like a formidable warrior ready to withstand anything that comes their way.

Why Typical Stress & Anxiety Management Strategies Could be Harmful in living with OCD

This word – formidable – was actually given to me by a friend many years ago as a way he would describe me and I kept coming back to it because it seemed so powerful. So unshakeable.

But with OCD, when I try to take control of the anxiety and the intrusive thoughts by distancing myself from them, being mindful of them, or essentially becoming apathetic – this only reinforces the need for the action, but doesn’t actually help the anxiety.

Let me explain: trigger warning ahead to do with violence, so go ahead and skip if you don’t want to read this part.

My OCD shows up as intrusive thoughts that me or someone I love is going to be murdered in my house. Actually as I was writing this I got a wild intrusive thought of someone behind me getting ready to stab me, even though it is physically impossible because my couch desk is up against a wall and there’s no room back there. Sometimes I feel like I’m washing my face and the water turns into blood and it’s sticky and thick and smells like metal…but then I open my eyes to see that yes, it is still water. My dreams without fail are different versions of serial killer dreams. I am either by myself, trapped, waiting for them to come back and kill me – or I’m with some other human that I get to watch die first before it’s my turn.

Not great.

END OF TRIGGER WARNING

Breaking the OCD Loop

So I get these intrusive thoughts which as I’m sure you can imagine create a ton of anxiety for me. Normal stress management, cognitive behavioural therapy, acceptance and commitment therapy, meditation, and mindfulness based stress reduction – they all teach about ways to notice the feeling, without judgement, and to let it move on often by doing something about it.

But when I do something about these thoughts triggered by OCD, then I’m  strengthening the idea that I’m in danger and that I NEED to do these things like somatic shaking or yoga or go through the CBT strategies in my head to dispute the fact that I am not indeed in danger.

Rather than have these be helpful and train my brain to not get randomly anxious several times per hour, these strategies just keep taking up more and more of my time and mental energy because my OCD is convinced that it NEEDS these things to feel safe. Over time these stress and anxiety management activities just keep getting less and less effective so this means that I need to do more of them or do them for a longer period of time…

And it makes life tricky because I’m being continuously interrupted by the need to do these anxiety relieving strategies for longer and longer. So, I see the therapist again this week to learn more about what the next steps are – but in the meantime, I sit with my discomfort.

I sit in the anxiety.

I wake up at 3:30 am every day feeling WIDE awake because of the increased amount of cortisol in my body.

And I continue to give myself grace as I trust in the process shared by those people who have much more experience in this area than I do.

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Fragile - Delta Goodrem