Sunday, January 25, 2015

Spreading the Word: OCD on the Air

I'm an avid listener of NPR and always enjoy their various shows and podcasts, and I was recently delighted when I stumbled upon not one, but two, radio segments dedicated to OCD - both what it is and how it is treated.  I have heard so many stories like my own, but I am still drawn to new accounts of others who have suffered.  Likewise, I appreciate it when professional reporters and story-tellers so aptly paint the picture of what it's like to experience OCD for the general public.  Because, while I live in a world where others know what OCD is, where others believe that most thoughts are just thoughts and have no hidden meaning about who or what we are, so many out there, including some therapists, still respond to OCD-type thoughts as meaningful in their own right and as potentially dangerous or harmful.  That mindset can be so heart-breakingly bewildering and detrimental to someone suffering from OCD.  I know it was for me.  The more awareness can be raised by stories like those I'll mention below, the better.  When we have treatments (like CBT, exposure and response prevention, and mindfulness) that can be immensely helpful to so many with this disorder, it seems such a shame that many don't get treatment sooner or don't find effective treatment until many months or years after their suffering begins.

That said, here are two podcasts that I thoroughly enjoyed:

I was already really looking forward to NPR's new show Invisibila and was immediately won over when Part 1 of the very first episode was dedicated to exploring the range of weird and secret thoughts people have and how those thoughts affect people with OCD.  Alix Spiegel and Lulu Miller, co-hosts of this new radio endeavor, do a lovely job leading into the story of one man who suffered from obsessional thoughts of harming others (aka "Harm OCD").  Not only do they capture his struggle and recovery in a very identifiable way, they also provide a great summary of some of the most common treatment modalities used by therapists today (as well as how some might work better than others in treating OCD).  I don't want to give too much away, but I, like the man described, initially found a therapist that too readily bought into the content of my thoughts, which only made my OCD worse.  This is one of the reasons I think it's so important to raise awareness about what OCD is and what treatments are considered most effective (again, CBT with exposure and response prevention and mindfulness). 

This second segment I actually just happened upon while listening to the radio one evening after work.  I tuned in mid-story, right as they were talking about having "weird" thoughts like the urge to throw oneself off the platform just as a speeding train approaches.  Intrigued, I went online to listen to the whole thing, and again I found myself excited to hear a compelling radio portrayal of what it's like to have OCD, this time as part of an episode of Fresh Air with Terry Gross.

While this episode does not go too thoroughly into the treatment side of things, I think it does a wonderful job demonstrating how "normal" people with OCD can be, all while struggling with a serious disorder.  In particular, I love the way it captures the paradox of being an very intelligent, rational individual while also grappling with, and often buying into, truly irrational thoughts.  As the man in this story describes, people with OCD can often recognize that their thoughts make no sense, and yet they still feel compelled to defend themselves against such obsessions by carrying out what are often equally irrational compulsions.  When I was at my worst and was truly suffering, part of me could recognize that my obsessions and (especially) my compulsions bordered on the absurd, and yet it was so difficult to resist them.  I think it just goes to show how strange our minds really are, as well as how important it is not to overlook the suffering of seeming "normal" individuals just because they do seem so, well, normal.  They, too, can suffer silently from serious psychological disorders.

I thoroughly enjoyed both of the above segments and hope to hear more like these in the future.  There are so many myths and misunderstood conceptions of what OCD is, and shows like this help capture the experience of OCD in an accessible way while also spreading the word about how it is treated.

Thursday, June 6, 2013

"Post"-OCD Life

The title of this post, I am well aware, is very much a misnomer.  OCD is still a living, breathing part of my daily existence, and always will be, to a certain degree.  However, I'm starting to feel as though I've entered a new stage in my recovery, one where I have to figure out that troubling and very confusing question:  what now?

For a solid three years my goal was to tackle my OCD.  Year one started with my life falling apart shortly after I graduated from college.  School had always been my life and provided a certain amount of structure and sense of purpose.  As I started my first year of work post-college the following fall, everything seemed to fall apart as one compulsion lead to another until I was having a hard time making it through just a single day at work.  This was followed by the search for help.  I was lucky in that I relatively quickly stumbled upon the name for my disorder and found an excellent treatment provider, one who was ready to help me fight back with cognitive-behavioral therapy and exposure and response prevention.

At first things continued to get worse before they got better - my OCD spiral had already gained considerable momentum before I got the right help, and it took time to get my treatment up to speed.  I had to become educated about my disorder and to understand the treatment process and how to fully apply it to my symptoms.  At a certain point, I was actively fighting my disorder, but was still in over my head when it came to work, especially since my job was the source of many of my triggers.  Eventually I went on disability in order to continue treatment without giving up on my job entirely.  In the few months that followed, I made a lot of progress, but ultimately resigned at the end of that disability period as I was not ready to be fully functional in my position and was unsure if I even wanted to follow that career path.

The next two years were a period of transition.  Things were still very tough, but my world was starting to gradually open up again.  OCD was on my mind constantly, but there was so much hope - hope that I could not only overcome that latest spate of severe symptoms that had prompted my need for treatment, but also hope that I could address some of the other compulsions that had lurked in the background for years.   Tackling my OCD was my new purpose.  My goal was not to resume the quality of life I had before OCD completely took over, but to attain an even greater degree of functionality and happiness.  I dreamed of being my old self minus all those pesky habits I could now see for what they were - unnecessary rituals designed to reduce discomfort.  Discomfort that would go away on its own if I just let it.

During the 2nd year I blogged a lot as my life was devoted to recovery and treatment.  I also started a mini-intensive treatment program designed by my therapist to help accelerate my progress, which at times seemed to falter between office visits.  For a couple months, I met with therapists daily, either in the office or in my home, to push past my progress plateau.  During that period, I also began working again.  At first only a couple times a week for an hour a two, and then gradually more and more.  Even though I was working, my life still centered around OCD.  It was what was always on my mind, and the prospect of becoming a happier more functional person through treatment buoyed me up and made me excited for my future.

Now enter year 3.  Looking back, the start of that year ultimately led to a lot of important changes that I didn't see coming.   It was at the beginning of year 3 that I finally moved away from the college neighborhood I'd inhabited for a good 6 years.  I also started  new, more demanding job while I continued some of my part time work.  That new job was more structured and forced me sit with the discomfort of triggers I had long avoided.  I also had co-workers again and had to learn to navigate the unfamiliar waters of thinking and talking about something other than my OCD.  I felt like I lived in two worlds, one where OCD and OCD treatment were the priority, and one where I did my best to leave the OCD world behind, one where I pretended to be a (gasp) "normal" person.

In some ways, not much is different from the start of year 3.  I live in the same apartment and work at the same place.  But somehow in the 2 years that have passed since, everything seems to have changed.  At some point being "normal" became less and less of an act, and more and more of a reality.  And rather than being thrilled to be relatively "normal" again, I'm left confused and slightly distraught.  How did I wind up staying in this job that was supposed to be a temporary stepping stone in recovery?  How did I become more functional but lose sight of all that hope? What happened to all that passion about OCD and all my aspirations and goals related to it?

The hint of depression started to surface this spring, half way into year 4.  It had been 3 and a half years since my world fell apart and I first sought treatment for OCD.  8 months earlier I had been promoted to a new and highly demanding position at my job, and OCD treatment officially became my second focus as work took over my life.  This spring a transitioned to a less demanding position, and since then, with the extra time, those questions I mentioned above have begun to trouble me more and more.  In a way, I have much of what I was working toward in treatment - a more balanced life that include work, socializing, working out, even dating.  I am "functional."  And yet, I'm dissatisfied.

I know that to a certain degree, my one-dimensional focus on OCD and its treatment was not a healthy and sustainable way of being, but I hoped to transfer that single-minded fervor to a job that valued it.  Perhaps as a counselor at a treatment center or as an assistant where research related to OCD and anxiety disorders was being performed.  Then, with more experience and more knowledge about possible career paths, I could go back to school and pursue a degree that would allow me treat OCD or perform research to further our understanding of this disorder.  I could continue to learn more about and grow from and apply my fascination with OCD.

But as work has become the focus of my life with OCD treatment relegated to the background, I find myself less and less sure about where my life is headed.  I am almost back to "normal," but still put up with compulsions that I had hoped to eventually obliterate.  What happened to all those grand aspirations for living a life that was better than before?  One without the compulsions that always existed even before my OCD got out of control?  What happened to that sense of purpose and drive that being in more intensive treatment instilled?  Is this just a new plateau in my progress? Or is it a stage in recovery where the grandiose ideas about how wonderful "normal" life will be have to be put into perspective?

It sounds absurd, but sometimes I think I was happier when I was in that in-between phase of years 2 and 3.  That phase where I had the luxury of focusing on just OCD, while readily feeling and seeing my improvement.  Back in the beginning of treatment, I had my therapist tell me that I would eventually have to grieve the time lost to OCD. He also told me that I would have to learn to readjust as compulsions were no longer the sole focus of my life.  Now, I feel as though I am finally experiencing both of these things.

First, grief and frustration for the time lost.  It seems like I went through so much and yet have landed back where I started.  Almost four years later there's the same level of baseline compulsivity, the same confusion of what to do next with my life now that school is over.  While my peers worked through the post-college ambiguity by trying out different jobs or going back to school, I wrapped myself in an OCD bubble for 4 years, a bubble that, while unpleasant for obvious reasons, also protected me from dealing with the bigger question of "what next?" I feel behind and unsure about to do now.  OCD was my struggle, but also my purpose and hope for the future.  And as work has taken over my life, and OCD has been placed more and more on the back burner, I wonder:  is OCD still my future?  Is it still my passion?  The thought of living a life continually devoted to OCD and its treatment once brought me so much hope and excitement.  Can it still?

I'm confused as ever in a new and different way.  What defined who I was for a solid 3 years, seems to have slipped away during the 4th.  What now?  Who am I? What do I want beyond escaping the confines of OCD?  How and to what degree should OCD and its treatment take part in this next chapter?

This all part of what I'm trying to figure out.

Sunday, June 24, 2012

A Return

It's been A LONG time.  In fact, so long that I'm just relieved to see that so many of the wonderful bloggers that were out there before are still around.  I'm grateful to be able to come back to this world and know that it is still here.

My life has drifted away from focusing so much on my OCD (which is good) but I have also drifted away from actively fighting it on a daily basis (which is not so good).  In fact, I've found it's easy to forget how much I'm letting things slip when I am not checking in with a therapist as frequently and when my life is so full of other things.  I've been working up a storm, but in-between, when I'm at home and on the weekends, the problems persist.  I've just gotten really good at working around them.  I want to return to this world, though, and to keep fighting and sharing my stories along the way.  This place has been an invaluable outlet in the past - a forum to relate, share, learn, and feel "normal" in ways I can't elsewhere. 

I've been distracted by so many other wonderful things, but ultimately this is where I want my focus to be - not only because I want to improve myself and my quality of life, but because I still know somewhere inside that I would like to pursue a career path in anxiety disorders.  I've lost sight of that just as I've lost sight of my treatment goals.  It's time to start heading back.

So here I am.

Saturday, October 29, 2011

Phone Jitters

Though I probably don't have enough of it to warrant a label, I think I do have some social anxiety.  It's gotten a lot better over the years - when I was a kid it was really so much worse.  Back then, I was often labeled "shy" or "quiet" and hated it because every time someone used one of those adjectives to describe me, it just seemed that much harder to overcome my difficulty of speaking up.  Those jolts of anxiety I got from voicing my opinion were intensified when I discovered that, despite my desire to be talkative and efforts to be outgoing, I was still perceived as being "quiet."   I had a hard time as it was being more vocal when not at ease, but when someone commented on how I was "shy," the self-consciousness would flare up even more, creating an even bigger hurdle to overcome when I wanted to express myself.

Like I said, it's a lot better now.  I think through accidental exposure and repeated confrontation of social situations, I have adjusted.  Just as I have begun to habituate to the fear of "feeling dirty" and other contamination-related concerns, I likewise have habituated to the fear of vocalizing my thoughts (and being evaluated negatively if do) by repeatedly putting myself or by being put in social situations that evoke anxiety.  The thoughts that maybe I'm really obviously "weird" or "different" or "awkward" (or that my comments are somehow "dumber" than those of other people) still linger, but they are less intense and they don't hold as much influence over my choices as they used to.  When I was a kid, I really grappled with insecurity and lack of self-confidence, and I still often do, but these days I am more often able to overcome that fear in order to make the decisions that I want to make and act how I want to act.  In fact, I really like to talk.  I did when I was a kid, too, but back then the fear of being judged and feeling embarrassment just seemed to overpower my eagerness to express myself.

What remains of that social anxiety tends to rear its ugly head when making phone calls for my job.  When I have to make a new contact for the first time, my anxiety shoots through the roof.  I type the number into the phone and just have to press "dial" whether I feel ready or not, because if I waited for the jitters to go away, I would never make that phone call.  I do my best to sound professional and not nervous, but sometimes I get off the phone and still think, "Wow, that was special..."  or "I said that the wrong way" or "I could have explained that better."

I try not to dwell on it, though, or reassure myself in a way that only feeds the fear.  Instead I think:  Maybe I sounded stupid, or maybe I didn't.  Maybe it was a better-than-average phone call, or maybe it was worse.  What's the worst case scenario?  That I sounded unprofessional?  What's so wrong with that?  While it's not exactly the way I wanted to present myself, who cares?  People say dumb things.  People botch phone calls.  People make mistakes.  It happens.  I'm not an exception and can't expect to be.  Humans do things "wrong" sometimes.  What makes me think that I'm any different?  I'm not.

Putting it into perspective helps, as does writing about it here.  I'm still coming down from the anxiety and jitters awakened by a few phone calls I had to make almost an hour ago, but if I have learned anything in treatment for OCD, it's that feelings are just that:  feelings.  They are not always a good barometer for what's a threat and what's not.  I could have made an awesome phone call and felt awful about it, or I could have actually made a phone call that was awful but felt good about it.  It all depends on how I interpret the situation.  To use my feelings as the sole measurement of my performance would be to fall into the trap of  one of those lovely "cognitive distortions" CBT therapists are always talking about - namely, emotional reasoning (i.e. I feel a certain way about something, therefore it must be true).  I know better than believe my feelings all the time, especially when I suspect that my alarm system is a little out of whack.  My body was already pumping with little waves of anxiety before I made the phone calls, so using that anxiety to judge the phone calls as a success or failure would be misleading. 

As with other fears, it basically comes down to accepting uncertainty.  Maybe I did well, maybe I didn't.  I can't be sure and I don't need to be.

Thursday, October 20, 2011

Tired in a Good Way

I'm tired and a little down this evening as I relax after a full day of intensive treatment and then work.  I want to go to bed but I also want to get my exposure work done.  I'm dreading doing the dishes in a way that I haven't normally lately - it probably has something to do with the fact that I have been putting them off several days and have started doing some new exposures that make me feel a bit dirty to be doing them.  Other than that I need to shower - 10 minutes is the current goal.  I took a 12 minute shower the other day and a 13 minute shower this morning.  Those are the obstacles (or opportunities, I suppose) that await me before going to bed.  Last night I put off showering for so long that I ended up not sleeping in my bed and not taking my meds (which make me sleep much better than I would otherwise).  And the night before that I only got about 5 hours of sleep, so I'm a bit run-down and tired.  Mostly I just feel like there's an overwhelming amount of things to do, and I'm running a little low on motivation to get them done.  I like that I am staying busy.  I have treatment everyday in the morning, work everyday in the afternoon, and work on top of it all on the weekends.  There's not really a day off but sometimes that's good - free time leads to compulsive avoidance and compulsivity in general, but then again, taking care of myself and getting enough rest also reduces the amount of compulsions I perform.

I guess what I'm trying to say is:  I'm tired, but in a good way.  I dread the exposures ahead of me for the evening, but that's better than dreading compulsions - at least the exposures provide some benefit.  So I'll take a break for a little while longer and then it's back to work battling my OCD for the evening.  OCD doesn't rest so neither can I.

Wednesday, October 19, 2011

Intensive Treatment Update

It's been an eventful few weeks.  I can hardly believe it, but I have been in my intensive treatment for almost a full month now and am about 2/3 of the way through the program.  Four hours a day, five days a week, I've been in treatment for OCD.  And I think I'm finally getting what I needed to propel me forward - a more aggressive, thorough, and persistent attack on my disorder, a sort of fight that I struggled to make with just one hour a week of therapy.

Perhaps I'll write more in depth on the actual experience of being in the program later, but right now I have another topic on my mind:  what will I do when I am out?  My number one fear:  slipping, losing not only the gains I've made but the forward momentum I've collected.  What I hope to take away with me is not necessarily the ability to face any one specific fear, but rather the willingness and readiness to do what it takes to get better.  It's so much easier to do what needs to be done when you are accountable each and every day of the week for the choices you make.  Can I maintain that and continue to progress when I am again on my own?  I hope so.

As I wrote in a previous post, what is often the hardest for me is breaking "the rules" without explicit permission from my therapist (i.e. I have often felt like I had to continue to perform a compulsion, whether or not it really seemed to serve much of a purpose anymore, until a therapist said the magic words, "This week I want you to work on not doing compulsions x, y, and z.").  I am continuing to get better at breaking "the rules" independently, and if I can hold onto the progress I've made in this area, I think I'll have an easier time applying my therapist's recommendations throughout the week, even with less time spent in therapy, once the program is over.  Though it still seems tenuous at times, I am so grateful to be working on and strengthening my ability to make therapeutically beneficial decisions without getting permission from a therapist for every last choice I make concerning exposure and response prevention.

What goes hand in hand with this is the realization that every compulsion, no matter how mandatory it feels, is ultimately a choice.  This idea has been discussed a lot over the last few weeks, and we also talked about how, at first, there really doesn't seem to be a choice.  OCD appears to have the all control.  But as you begin to make more and more non-compulsive choices, the power starts to feel as if its being transferred away from the OCD and back to you.

I was skeptical at first.  I knew deep down that compulsions were a choice:  I knew that if someone were to hold a gun to my head and threaten to shoot if I didn't stop washing, I could turn the faucet off.  But short of just that scenario, it seemed pretty impossible to choose to forgo so many compulsions.  And it was hard to imagine a space where I wouldn't constantly have to have a frustrated therapist breathing down my neck for me for me to be able to make non-compulsive choices.  But now, more than ever in my life and especially since my big relapse, I feel like the OCD and myself are on an equal playing field.  OCD no longer has me outnumbered a billion to one.  And what's even more interesting to consider is that, in reality, OCD actually has no power but the power I give it.  OCD may seem less threatening than it once did, but the only reason it still holds any clout at all is because I let it have that power when I choose to perform compulsions.

I don't know why it's taken so long for all this to sink in, but it has, and it's incredibly hopeful and freeing.

Wednesday, October 5, 2011

Fighting Like Hell

It's been a long time since I posted and even longer since I've made posts regularly.  But, tonight, well I'm feeling in the mood to write, and goodness, there's plenty to write about.

A couple weeks ago now I began an intensive treatment program.  I'm basically in treatment about 20 hours a week.  And in the time since I started that program, well, I have done things that I am not even sure I would have done BEFORE my contamination OCD flared out of control.  As I write, I feel dirty, but I am also determined to keep going, to resist the urges to avoid and perform other compulsions that would be so easy to give in to.  I feel as though I'm finally making a solid effort to wholeheartedly commit to doing ERP as I know it needs to be done.  I'm finally breaking the rules that, for so long, I felt couldn't be broken, even while I was doing active exposure work in the past.  I am rebelling against my OCD and doing what I know, deep down, I want to do - I want to stop dragging my feet, stop undermining my treatment, and go towards those things I feel a need to avoid.  It has its ups and downs, but I feel like I have finally broken down my fear of fighting back fully.

Before I always felt like I HAD TO self-sabotage, like I had to wait for explicit and specific directions from my therapist to do an exposure.  If I didn't, well, I felt like I was being some sort of hypocritical, negligent individual who "couldn't really have OCD."  Even then, I would find myself pulled away from compliance by urges to hold myself back until someone "forced" me to do what needed to be done.  While self-handicapping is still tempting, it doesn't feel quite so mandatory.  I feel like, for the first time, I can independently make the choice to do exposures and to do them without perfect "permission" from a therapist.  And that feels like the key:  for so long I have desperately NEEDED the self-sufficiency and adaptability of being able to chose therapeutic decisions on my own.  It's still a challenge, but I'm finally seeing and feeling a glimmer of independence that has long been buried deep, tangled amidst the myriad of twisted "rules" and compulsions.


Related Posts with Thumbnails