Poetry: “My head hurts, I must have a brain tumor” and other ruminations

I think I hear voices

Yup, I hear voices.

I’m 17 lying face down on the kitchen floor, head pressed against the refrigerator to convince myself the noises I hear are actually coming from the refrigerator.

They are.

But I still think I have schizophrenia

I spend the following 2 months triple checking every noise I hear

 

I am 30.

I am sitting in the Target waiting room

Crying

Because a few minutes ago the thought crossed my mind:

“What if I suddenly forget how to leave the store?”

Naturally, I panic.

I forget where the doors are.

I sit in the waiting room for the next 20 minutes reminding myself

It’s just your anxiety.  It’s just your OCD.

 

I am 7. And 8. And 9…… and 32.

I am examining and cautiously tasting my food.  Everything feels contaminated.

What if it’s not cooked right? Did they check the expiration dates? Did they wash their hands? Did I wash my hands? Did I wash them enough? What if I didn’t wash them but think I did?

 

I am 32 and….

I have ERP. I have Mindfulness.  I have ACT.  I have a community of people like me

I have: “I’m going to bed so I get enough sleep. Can you turn the TV down, please?”

I have: “The thought paralyzed me for a minute but I’m eating that pizza” because exposures and stuff

 

I am 32 and I have OCD.

And although I am typing this with cracked hands from the latest episode of excessive hand washing, I am grateful, most of the time, for this thing that causes me to be intimately aware of the complexity of the human experience.  

 

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On Resilience: A mid-journey reflection towards recovery

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When was the last time you looked at yourself in the mirror and reminded yourself of your resilience? When was the last time you reminded yourself of the days you’ve pulled yourself out of bed and the days you’ve faced anxiety?  When was the last time you took a step back and found appreciation in everything you’ve tried in order to get better? Everyday you’ve overcome even the smallest things are examples of your resilience.  For those of us living with a mental health condition, the day we recognized our mental illness was also the day that resilience was woven into the fabric of who we are.

I know a little bit about resilience. Eight years ago I felt as though I’d never be where I am now.  Eight years ago I’d wake up shaking, heart palpitating in my ears, and feeling as though I had something incredibly urgent to do nearly every night.  In those early years after my OCD diagnosis, I felt like my marriage, career, and friendships would end because of my mental illness: I lacked the tools to bring myself out of fears that stopped me from living, I had no concept of self-care because all of my energy was focused on simply surviving the day, I became paralyzed at the thought of facing difficult things related to my own well-being.

When I share my story with others I am often asked what I did to start the climb towards recovery.  While I can’t remember which changes I made first, I do remember that there was a mental shift in two key areas which propelled the changes I’ve made.

1) I became stubborn about being resilient.  I allowed myself to feel down and scared but promised myself that when I was done, I’d ask: ” Ok, what can we do about this now?”  Asking myself this question empowered me to feel, acknowledge, analyze, then act. It also empowered me to forgive myself if I failed. Realizing that I could label myself as resilient AND still have anxiety and OCD helped begin to slowly push back against the black and white thinking that blocked me from pursuing changes that could lead to recovery.

2) I got into the habit of checking in with my basic needs and had to reminded myself that taking care of me was ok.  My meditation practice (which I was very skeptical about initially), helped greatly with this.  I came to realize that I had little concept of my basic needs. I’d let myself be hungry (sometimes I felt I did it as a form of self-punishment), I’d stay up late, I wouldn’t exercise, I didn’t make time to enjoy myself (I’m still terrible at this).  As my self-awareness grew with my meditation practice and as I became more familiar with things like wellness wheels, self-compassion, and Maslow’s Hierarchy of Needs, I began to check in with myself.  “What do you need right now?” has become something I ask myself at least twice a day.  Paying more attention to my basic needs (and finding tools to help me keep track of them because mental wellness has an operations and logistics element to it) improved my energy levels so that I could tackle the hard work of exposures for OCD.  You can’t fight the mental part effectively if your body feels like you’re not taking care of it.

These two key changes fueled the small life changes that have taken me nearly 8 years to implement.  I meditate daily.  I make time for nightly reflection and gratitude.  I read about mental wellness/illness and connect with others to help me feel that I am not alone.  I make time for exercise (that’s a new one!).  And you know what, some days are still really hard.  I know I am not in recovery.  I am mid-journey but I now give myself the space to acknowledge how far I’ve come.  I allow myself to fail but I don’t allow myself to think that I’m incapable of great change.  If my brain has the power to create some truly frightening scenarios, it also has the capacity to get me out of them.

Believing in your capacity for change, reminding yourself of even the smallest accomplishments, checking in with your basic needs, and believing that YOU ARE resilient are the building blocks for living this life.

 

 

 

 

 

 

Everything I know about OCD is in here

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Yesterday I stood in front of the tea kettle while my OCD tried to convince me to throw the water out (which I did, 3 times).  You see, my recent obsession is that I will unconsciously spray Windex into the food I prepare.  Sounds ridiculous, you say?  Yeah.  I hear you.  I notice the irrationality too but that’s the nature of living with the beast.  It says to you: “Hey, what if that booth you just leaned your head against has lice?  Quick, shake your hair to get it off!”  It says: “What if you just accidentally ran someone over with your car and didn’t notice and now you’re a murderer.  Go check that someone isn’t laying on the ground!”  It says: “What if that meat you just cooked is spoiled and you didn’t smell it ‘the right way’ and now you’re going to get food poisoning.”

So, what’s OCD?

(That thing above, what I just wrote…THAT’S OCD).  It’s not quirky.  It’s not putting things in order because you like it that way.  It’s not color coding things to make them look cute and organized.  It’s a debilitating, time-sucking, monster that makes you question yourself, your decisions, and makes you act out compulsions that transform the way you live your everyday life.  It is mentally, physically, and emotionally draining.  It makes you seek reassurance from others. It creates a shit load of rules that makes you sometimes feel like you live in a tiny box and, quite simply, it sucks.

OCD is not an anxiety disorder. In the most recent publication of the DSM-V published in May of 2013 (the DSM is like the Bible for all mental disorders) Obsessive Compulsive Disorder is categorized under the heading “Obsessive Compulsive and Related Disorders.”  It shares a chapter with its cousins:  Hoarding disorder, Trichotillomania, and Excoriation Disorder. OCD is characterized by recurring thoughts (obsessions) and behaviors (compulsions) performed by the sufferer which are meant to subdue the anxiety caused by the thoughts.  People are well aware that their obsessions and compulsions are irrational but have a very challenging time ignoring the thoughts and refraining from acting out compulsions (Source: Beyondocd.org). The World Health Organization has classified OCD as one of the top 10 most debilitating illnesses.  What’s at the top of the list, you wonder?  Depression.

OCD thoughts tend to focus on themes which include: contamination, violent or sexual obsessions, sexuality, self harm, relationships, losing control, scrupulosity, perfectionism and superstitious ideas (Source: IOCDF).  The thoughts are incredibly distressing and make you question who you are at your core.  Here’s the kicker:  every person you know has some of these weird thoughts once in a while (and if they say they don’t, they’re lying).  In an OCD brain these thoughts are stickier and recurring.  A non-OCD brain thinks the thought and goes: “Huh, well that shit was weird. LOL.”  An OCD person thinks the thought and goes: “OMG.  WTF?! What was that!? What type of person would think these things?! What do I do to make it go away?”  The latter happens to about 2.3% of the U.S. population (Source: BeyondOCD).  Those people have OCD.

Sticky thoughts are connected to these things called cognitive distortions which are essentially distorted thinking patterns you use to make decisions.  Examples of cognitive distortions are (Source: Permanente Medical Group):

  • I have to do things perfectly
  • Feelings are facts (Ex.  I feel like I’m going crazy, therefore I’m going crazy)
  • Things have to “feel right”
  • Thought-action fusion:  The belief that having the thought is the same as doing the thought
  • superstitious and magical thinking (Ex. knocking on wood will prevent a family member from dying)
  • Hyper-religious thinking
  • symmetrical things will prevent bad things from happening
  • I am responsible for it all
  • I should be in control
  • It’s all or nothing (black and white thinking)
  • The details are critical
  • symbolic linking: If A touches B and B touches me, I’m going to get sick
  • good times won’t last

My OCD has revolved around fears of contamination since my diagnosis in 2012.  My fears have significantly impacted socializing with people, especially when food is present.  It has changed how and what I eat (and not in a health way… organic things spoil, you know).  It dictates the order in which I put on makeup so much so that I hardly wear it anymore (even though I love the art of makeup, a lot).  I watch people’s hand washing behaviors, obsess about not touching my face, have rituals around shower time that have literally given me such anxiety I am always on the verge of a vertigo spell whenever I shower, etc. etc. etc.  I have rules for myself.  Lots of them.  My cognitive distortions are connected to hyper-responsibility, control, symbolic linking, and doing things until they “feel right.”  It is exhausting and difficult.

So how do we help others understand what it’s like?  

Person with OCD:  So I have this thing called OCD where I have these really distressing thoughts that I can’t seem to get out of my head.  In order to lessen the anxiety about the thoughts I have these rituals I’ve created that I need to follow.

Person without OCD:  Why don’t you just try not to think about it?  Or don’t do the compulsion?  Can’t you just distract your brain?

Person with OCD:  (sarcastically) Oh, hey!  I hadn’t thought of that!  You just solved OCD!  (I’m kidding.  Don’t say that.. Don’t be an a**hole.  Most people who give that answer are really just trying to help).

You might be able to help people understand OCD by talking to them about Russian homie Leo Tolstoy and the polar bear story.  In David Adam’s book The man who couldn’t stop he tells the story of how Leo Tolstoy would ask his siblings to not think of a white bear in order to be able to enter the Ant Brothers, a club he had invented. As you might imagine, anyone who is asked to talk to you about something with the condition that they not think of a white bear is probably going to think of a white bear, whether they have OCD or not.  This anecdote is a good introduction for anyone trying to understand how sticky some thoughts can be and how repressing unwanted thoughts will just make them come back in full force.

How does one get OCD?

I have my own theories about why I developed OCD.  I grew up in a low-income home where getting sick was to be avoided at all costs.  We didn’t have health insurance and struggled to make ends meet until our financial situation changed when I was 15.  Fears of sickness and the extreme fears my family experienced when we got sick continue to permeate our conversations to this day, even though we all now have health insurance.  Case in point: I recently developed a cold with a very mild fever.  My mother, who got wind of said fever, texted me to tell me that a fever is no joke and that I should take care of it asap because if I don’t I might get convulsions and die (thanks, Mom).  My OCD could have very well been the result of the environment I grew up in, but it also could have been the result of genetics (my mother has some evidence of OCD) or trauma.  Studies have demonstrated that OCD and/or PTSD are very likely to develop after a childhood trauma (Source).

There is also evidence to suggest that the OCD brain is simply different from those who do not have OCD (Source: IOCDF).  Communication between various parts of the brain does not function properly in an OCD brain and the neurotransmitter serotonin may be a contributing factor to this lack of adequate communication (this is why taking medication like SSRIs which increase the levels of serotonin help people with OCD). MRIs have also demonstrated that people with OCD may have abnormalities in brain structures.  For example, in research conducted by Jenike, Brieter, Baer, et al in 1996, it was revealed that the cortex tended to be larger in participants with OCD (Source: The OCD Workbook, 1997).

Whether OCD comes from differences in brain structure, chemical imbalances, genetics, environment, trauma – the central question remains….

How do you treat it?

The solution is quite simple (and not): “Do the thing you fear, and the death of fear is certain” – Ralph Waldo Emerson.  Emerson knew what he was talking about.

Facing your fears comes hand in hand with learning a whole lot of important acronyms.  I have gone through two rounds of Cognitive Behavioral Therapy (CBT) with Exposure and Response Prevention (ERP).  CBT is a form of talk therapy with the goal of changing your thinking and behavior so that you make healthier choices.  ERP is the act of creating a plan of action where you expose yourself (in real or imaginary situations) to the fear and then resist the desire to perform compulsions.  The goal is pretty much what Emerson described: face the monster and the monster turns into annoying side chatter rather than something to be feared.

An ERP plan is created by writing your fears using a SUDS scale (subjective units of distress).  Essentially, you list your fears in order by what scares you the most and start by facing the less scary fears.  For each fear, my therapists had me write a brief summary about each fear using the following structure (which I adapted and added elements of ACT, which I’ll discuss in a bit):

  • Name the fear and take it to the worst case scenario (If, then):  If I don’t wash my hands I will get sick.  I may not be able to manage the sickness and I will end up in the hospital.
  • What’s the cognitive distortion?:  Control, black and white thinking
  • How is this affecting my daily life? Hand washing is making me avoid being around people and I am washing my hands excessively (they get dry and red and it makes me embarrassed when people notice).
  • What are my values?  I want to be able to socialize without worrying about getting sick.  I want to feel like I’m taking care of my body in a healthy way.
  • Positive thought:  I deserve to be around people I love, enjoy myself, and to take care of my body.
  • Positive action:  I will only wash my hands once before eating and after going to the bathroom.

An ERP plan can be created using either a SUDS scale or a Willingness scale (present when doing ACT).  ACT (Acceptance and Commitment Therapy) is a type of behavioral therapy whose aim is to help you take action with your values in mind.  Rather than putting your fears in order by what is most to least distressing, your fears are ordered in terms of your values- a willingness scale where actions are measured by how willing you are to do them.  You are taught to accept your thoughts as they come, to watch them float by and, as Mark Freeman explains in this video, to internalize the idea that “you are not your thoughts.” Your actions and exposures are lead by your personal values.  For example, if you have contamination fears around food that stop you from cooking, you remind yourself how much you value eating healthy/preparing  your own meal/learning the art of cooking and you make the decision to cook.  You accept that you can both cook (live according to your values) and have the distressing thought (which is just a thought) at the same time.  As part of the ACT approach, you are also taught cognitive difusion techniques.  These techniques are ways to talk back to your fears in order to help you see them as simply thoughts.  My cognitive difusion technique has been to say:  “No thank you.  It’s just a thought.  I choose peace.”  You can check out other cognitive difusion ideas here.

ACT is a process I am attempting to incorporate into my life more regularly.  The mindfulness practice embedded in the therapy is something that drew me in immediately.  ACT makes sense to me because it incorporates values I picked up through my meditation practice which I began in 2016 upon joining Insight Timer- a FREE app with a wonderful community of world-wide meditators and numerous meditations to choose from. (If you’re new to meditation, I’d suggest getting the low down on meditation via the Headspace App first). Meditation has taught me to observe and label my emotions without allowing myself to become sucked into the fear and anxiety they bring.  I have learned to be more aware of my breath and body tension before it gets worse.  As a result, everyday I practice I renew my commitment to myself and it helps me get through difficult days.

What about medicine?

This is an area that is foreign to me but that I plan to dive into within the next month.  The primary type of medication that is prescribed for OCD are SSRIs.  You can learn more about them on the IOCDF website along with recommended dosages.  The central purpose of SSRIs is to increase the levels of serotonin in your brain.

If you are considering medication, here are a couple of questions you can use to guide your conversation with your doctor.  I am incredibly fortunate to be part of a strong OCD community on Twitter who helped me develop this list.

  • What are the side effects?
  • What are the effects of long-term use?
  • What is your experience with OCD patients?  What do they typically try first?  What is your philosophy for medications?
  • What can I expect once I go off of the medication?
  • How long of a transition will my body need to adjust to the medication?
  • Will I be able to stop it right away if I don’t want to take it?
  • How long before I begin to feel better?

As you can see there are so many things available for you to try.

But can I make it worse? 

The simple answer is yes.  You can make your OCD worse by feeding the monster.  Giving yourself the leeway to “just check this one time” or to give into the fear is what feeds the monster.  Every time you check, check again, and check once more, your brain will only become less convinced that things are ok.  I am a precautionary tale: I made the decision to let go of all of my OCD knowledge while I was undergoing EMDR therapy for child sexual abuse.  The thought of handling both seemed far too much for me to handle.  The result:  I am now retracing my steps.  Although this time around I have knowledge of the tools I need in order to be successful, it’s still an upward climb.

You will learn some valuable lessons through this very human and difficult experience…..

There are times when I sit and cry.  I get angry.  I have “why me” moments.  I wonder what “normal” people’s lives are like and wish, for just a day, I could be them.  But when my mind calms and I choose to look at this experience from a bird’s eye view, I see how much this experience has humbled me.  When people share their difficulties with me, there is a level of human understanding that is rooted at the heart.  I know my values because I am faced with something that challenges them every single day.  I am challenged to move along a path that pushes me to let go of control, to go with the flow, and to be ok with uncertainty. OCD makes you live in such a way where every decision is determined by fears set in the future.  Because of this, this illness challenges me to live in the present.  It asks me to breathe in the difficulty, to see it as part of my experience, to thank it for wanting to take care of me, and to, with compassion and fortitude, look it in the eye and say: “Thank you for trying to take care of me, but I’ve got this.  You are a thought.  You are just a thought.”

So.

There you have it.

Everything I’ve learned about OCD.

Thank you for coming to my TED Talk. 🙂

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“Grit your teeth in the face of your thoughts and for God’s sake be more obstinate, head strong and willful…. Indeed, be harder than an anvil…If necessary speak coarsely and disrespectfully like this: Dear devil, if you can’t do better than that, kiss my toe” – Martin Luther, 1483-1546. (Source: The man who couldn’t stop by David Adam).