Tuesday, March 22, 2011

Katie L and Doubt: the story of a Mormon girl with Pure-O (part I)

Hi friends! This Depression Profile is actually in two parts and is not exactly about depression. A wonderful woman, Katie L, contacted me and told me about her years of struggle with Pure-O OCD and the effect it had on her spirituality as a Mormon. (While this lady was not clinically depressed her struggles did lead to some depressive episodes.) Pure-O OCD is a (somewhat disputed) anxiety condition where the sufferer obsesses about unwanted, intrusive thoughts without any recognizable or outward compulsions. For me this kind of obsessing was the defining factor of the postpartum period with my first child. It's also how I know when I am on the brink of a breakdown. Having experienced a version of this myself, I really appreciate how Katie L. describes this. Her writing is vivid and the information she gives important. For more info on Pure-O check out the website The Other OCD or the books The Imp of the Mind by Lee Baer, Brain Lock: Overcoming Obsessive-Compulsive Behavior by Dr. Jeffrey M. Schwartz, and When in Doubt, Make Belief by Jeff Bell.

Name: Katie L.
Location: Pacific Northwest
Age: 29
Religion: Mormon

I can't remember a time in my life when I didn't struggle with anxiety. It became more pronounced around the age of nine, though. Before then, I'd feel very guilty about things I did wrong and make conscientious attempts to avoid sin; by the age of nine, my flirtation with guilt and doubt had blossomed to a full-blown romance.
OCD is sometimes called "the doubting disease," and that description resonates deeply with me. From 9-years-old on, I not only experienced doubt about things that are "normal" to doubt -- such as the existence of God or the truthfulness of the Church (though perhaps the severity was abnormal for someone so young) -- but I also began to have very strange doubts. For example, I would feel guilty for doing something and then feel unsure about whether or not I actually did it.

I developed a fairly severe confession compulsion. Whenever I did something wrong, I confessed it to my mother. If I wasn't sure whether or not something I'd done was actually wrong, I confessed it anyway, just in case. Sometimes, questions arose about who had done one thing or another -- who broke the scooter in the basement, who took Dad's quarters off the dresser, who made a mess in the laundry room -- and I confessed, even though I had no recollection of doing it.

Eventually, my mother caught on that something wasn't quite right. We didn't have enough information to call it OCD, but it became okay for me to say, "I don't know if I did it or not!" Although I imagine that some parents would have assumed that their child was trying to get out of punishment, somehow my mom understood that I was being honest -- I really wasn't sure -- and she didn't press me on it. In fact, she often reassured me that I probably hadn't committed the crime in question.

I also found myself praying constantly. I prayed for forgiveness. Unwanted thoughts about the truthfulness of the church would trouble me, so I prayed for a stronger testimony. I prayed to "know" whether or not I had actually committed the sins I worried about. I prayed for help overcoming my weaknesses, both real and imagined.

As I grew older and learned about sex, I became troubled with disturbing sexual images that would flash through my mind frequently (well, disturbing for a scrupulous pre-teen; I realize now they were pretty tame).
[Laura's note: scrupulosity is a technical term for a moral or religiously fixated OCD. What Katie L describes above is a quintessential definition. For more on scrupulosity check out this scrupulosity blog and this article from Catholic Culture or the book Devil in the Details, about a girl growing up Jewish and with OCD.] For a period of about a month when I was 10 or 11, I refused to take the sacrament, because I believed I was unworthy due to "dirty thoughts." I feared that by partaking of the sacrament I would eat and drink damnation to my soul. (Finally my mom asked what was going on, and when I told her, she said it was okay to take the sacrament even if you couldn't completely eliminate bad thoughts from your mind, because that's what the atonement is all about.)

I began to fear the Second Coming because I believed that I would be cast into the fire due to the intrusive obsessions and my inability to be perfectly clean. I started begging God to wait to send Jesus until I was worthy, to give me enough time to properly repent of my sins.

As I've gotten older I've found that Doubt targets whatever is the most important to me. For example, in my late teens, I fell in love for the first time and began to think of myself as a sexual person who could be attractive to men. So OCD hit me there: I developed an obsession about my sexual orientation (this is different from real homosexual attractions or sexual curiosities; what I experienced were overpowering fears that one day I would wake up and suddenly "discover" I was gay).[Laura's note: H-OCD is a subset of OCD where the sufferer worries that they are actually gay but don't know it or that they have somehow done something that makes them gay but don't remember it. Often it takes the form of obsessing over the fact that the individual cannot ever remember being not-gay, not just straight but not-gay--a distinction that really only makes sense in the context of OCD. For more information on understanding the difference between sexual orientations and HOCD check out this website, Gay or Obsessive-Compulsive Disorder:Homosexual fears and OCD. Please, please, please don't think this is a comment on sexual orientation; it's not.]

On my mission, my doubts about the truthfulness of the church intensified to near-deafening levels. I found myself agonizing over the use of "you"-pronouns in the Book of Mormon -- did it use "ye" vs. "thee" properly? I struggled with feelings of unworthiness, and questions as to whether or not I had done bad things arose again. I confessed several non-sins to priesthood leaders on at least five separate occasions.

When I was pregnant with my daughter, I began obsessing that I might harm her after she was born. That's when I finally checked myself into therapy -- I simply could not bear those thoughts, nor their implications.
These days, although my symptoms are much milder thanks to effective treatment and a softer worldview that I've worked consciously to develop, I continue to struggle with obsessive thoughts. Lately, they tend to focus around whether the people I am close to "really" love me, the veracity of my religious beliefs (this one dies hard), and whether the food I'm about to eat is going to make me sick.

On my worst days, the obsessions are so overpowering that I think about little else. My stomach is in knots. I spend the day praying, checking things online, seeking reassurance -- and, of course, ruminating. Rumination involves trying to solve whatever unsolvable problem is in front of me, an attempt to "think" myself out of Doubt. Since I'm "Pure-O," this is by far my most consuming compulsion.

Because my compulsions are primarily mental, unless it's a really, really bad day, it's easy to hide my disorder. This is both a blessing and a curse. It's a blessing because there are often legitimate reasons why you might want to keep something like this private. But it's a curse because it isolates you. For example, for years my husband -- yes, the dude I live with every day! -- had no idea I struggled with anxiety because I was so skilled at hiding it, so adept at going through the motions of daily life, even while I was suffocating in Doubt's stranglehold.

I have had perfectly normal, funny, seemingly carefree interactions with people, while inside my mind and stomach are absolutely churning. I have often excused myself from a class, meeting, or conversation to retreat to the bathroom, drop to my knees in anguish, beg God to take it away -- and then stand up, look in the mirror, put my smile back on, and return to face the world.

That's a terrible way to live. I don't recommend it.

[Laura's note: Please come back and read part II. I promise this story has a better ending!!]

Katie L and Doubt: the story of a Mormon girl with Pure-O (part II)

This is part II of Katie L's story. For part I please read here.

My obsessions have almost always revolved around religion. (This is actually a common enough theme for OCD sufferers that it has its own term, "scrupulosity.") This has made my relationship with both the church and God very complicated. To be totally blunt, there are aspects of Mormon teaching and practice that make life hell for OCD sufferers like me (and that I believe are unnecessary burdens for the rest of the membership) -- and if I were in charge, I would change them in a heartbeat. (Which, let's be honest, might be one of the myriad reasons why God hasn't seen fit to put me in charge.) ;-)

Still, my commitment to my Mormon faith goes very deep. It has supplied me with so many beautiful things: my family, many of my closest friends and most rewarding associations, dozens if not hundreds of life-changing experiences, a language and culture and framework for service and worship that feed my soul.
When it comes right down to it, though, I consider myself a disciple of Jesus before anything else. Mormonism is my religious community where I fellowship and live out my faith; but my hope is in Christ alone. OCD has required that I let go of minutiae and details, or I'll drive myself crazy -- quite literally! -- and so, out of necessity, I choose to focus on one thing. That one thing is Christ. (And I'm not sure, but I the more I learn the more I discover that that just might be what the scriptures ask me to do anyway.) :-)

Bottom line: it's taken me a long time to get some space between OCD and what I really believe about God, but what I've discovered is full of hope. Still, I imagine that this is something I'll be unraveling until the day I die.

Since I've been officially diagnosed with OCD -- specifically, "Pure-O," or "Pure Obsessional" OCD things have gotten better. (This is really a misnomer; as best I understand it, OCD always contains both obsessions AND compulsions. It's just that a "Pure-O" sufferer tends to have mental, as opposed to physical, compulsions.)

For treatment, I've tried traditional talk therapy (this was before I was diagnosed, and while it was helpful in addressing some of the collateral damage my disorder caused, it didn't touch the core issue), mindfulness therapy (helpful!), and a 4-step process from a book called Brain Lock: Free Yourself from Obsessive Compulsive Behavior by Dr. Jeffrey M. Schwartz (SUPER DUPER HELPFUL!). There is nothing I won't consider, though the Brain Lock treatment I've been using lately has been effective enough that I might not need to explore too many more options.
[Laura's note: from what I understand the majority of OCD sufferers do very well with Cognitive Behavioral Therapy, but there are also many who do not find relief until they try medication. For some, it takes a combination of both for relief.]

Having Pure-O OCD has made me much more spiritual than I believe I would have been without it. I have a tendency toward rigid, dogmatic, black-and-white thinking, and without OCD, I probably would have stayed there comfortably. But because I took my dogmatism to such an extreme that it was debilitating, I was forced to change my perspective for my very survival. Living like a Pharisee (like I did for years) is a spiritual dead end. Achieving moral perfection is simply impossible -- believe me, I've tried.

When God opened my eyes to the good news of His gospel, to the reality of His grace and mercy and love, it was like oxygen for a dying soul. I am now able to handle the messiness and ambiguity of life much better. I find myself filled with compassion and tolerance for others and their sins and weaknesses, because I have so much time agonizing over mine.

I believe that God gave me OCD to teach me how to love other people and to remind me how desperately I need Him. As painful as it has been over the years, I praise Him for that and consider it a gift.

On my best days, the anxiety is just a blip. An obsessive thought will come, and I'll make a mental note of it (or write it down on a note card), take inventory of the compulsion it wants me to perform, and then say, "Screw you, OCD. I'm NOT going to spend two hours agonizing over this. I'm gonna go do something else." And then I do.

I never expect the thoughts to go away. Maybe one day they will, but for now, I'm stuck with them. So I simply accept them, train myself to ignore them. I remind myself that if my heart is pumping, my stomach twisting, my hands cold and sweaty, then chances are it's an OCD thought and not something I need to take seriously.
So, on my best days, I don't.

I wish people understood how dang freakin' hard it is to diagnose this. Many Pure-O OCD sufferers go years, even in therapy, without a proper diagnosis. That's because, on face value, it can look a lot like general anxiety. A Pure-O OCD sufferer will come in with one obsession or another, and because there are no obvious compulsions like hand-washing or lock-checking, the therapist will treat the content of the obsession as opposed to the disorder itself.

In the end, it doesn't matter what you're obsessing about: OCD is about doubt (the obsession) and trying to neutralize that doubt (the compulsion). Whether you doubt that you really locked that door, or if your hands are really clean, or if your bad thoughts are enough to make God damn you for eternity -- and whether you respond by checking the doors, or washing your hands, or praying or confessing or ruminating -- it's irrelevant. You have to treat OCD like OCD to get better.

If anything that I've described today sounds familiar, I strongly recommend that you seek an evaluation from an OCD expert. I went through three counselors over five years before I finally found one who helped me figure out what was really going on with me. Getting the right diagnosis and the right treatment has made all the difference in my life.

Also, please feel free to reach out to me if there's anything I can do to help. I feel as though my own experiences have purpose and meaning when I can help others who are struggling. My email address is katiel2952 AT gmail DOT com.

To read more from Katie check out her blog Standing, Sitting, Lying Down. Also, if you'd like to share your own story of mood disorder or mental health issues feel free to email me at lolapalooza AT hotmail DOT com. Be sure to put "depression profile" in the subject line so I know you're not a spammer!

Monday, March 21, 2011

Welcome to Depressed LDS Woman (with a little Mirthful Monday thrown in)

Hey folks, guess what! There's another Depressed Mormon Mommy out there! And she blogs!

Go check out Depressed LDS Woman's blog. She's just getting started and has some good stuff. It makes us all stronger when we own our struggles and share them with others.

And for some more fun, here's a relatively recent article on Mormon women and depression. Well, really, in an oddly disjointed way, it's about Mormon men and depression--which makes it extra fun reading :) And the pic to go with the article is classic:

Tell me, is she depressed or playing hide and seek? Maybe she's washing her face? Or hiding from the mess on the kitchen floor after dinner like I do? Depression is just so hard to figure out!

Have a Mirthful Monday!

Friday, March 11, 2011

New Year's Resolutions and Changes to the Blog

So I am aware that it is now the second week of March. It is officially too late to blog about New Year's Resolutions, but I'm going for it anyway.

(As a side note, it would be very interesting to me to go back and see how many posts I start with the word "so". It's probably nearly every one. So . . .)

Resolutions have a pretty mixed implications for those of us in the mood disordered world. On the one hand we usually know there are ways we could stand to improve our lives and (unless we're really feeling low) we'd like to change for the better. Of course, on the other hand, we are prone to guilt complexes and anxiety that can make it almost impossible to stick with goals long term. Not to mention the fact that the stuff we have to do (therapy appointment, psych evaluations, extra sleep, etc.) to stay mentally healthy take up a fair amount of extra time and energy. It seems like good mental health is my perennial goal.

Even understanding all that every year around January 1st, I spend days pondering on what I can do to make my life better without stressing myself out. This year I almost resolved not to do anything. I'm feeling pretty good these days; why mess with what works? But then I realized that my writing brain was reasserting itself and I started getting grand ideas about NaNoWriMo. For about two weeks I resolved to participate in that this year. I started trying to figure out how I was going to write 50,000 words in a single month and how many things were going to have to go and what kind of planning was needed. Somewhere along in there is when I realized that more than I needed to have another draft of some unfinished piece of writing I needed to have a finished piece of work I was proud of.

One of my biggest weaknesses as a writer is that I am horrible at seeing projects through the revision process. I love brainstorming ideas. I enjoy the rough drafting. I especially love telling people that I am working on something fabulous. But fairly often I don't seem things through. I seldom finish and polish a piece--especially long things.

I like to blame this on the cyclic nature of my mood disorder. I go through those up periods where I'm feeling great and agree to do everything under the sun and then I inevitably hit a slump and find myself begging off projects or just ignoring them altogether. To any of you readers who have been with me through this process, I sincerely apologize. Really.

My mood disorder is probably only part of the problem, though. I'd love to use it as an excuse, but you (Dear Reader) and I both know that mood disorders are not an excuse for bad behavior. Rather they are just one more thing to work with. Everybody and anybody can come up with excuses for why they can't do things. Strong people come up with reasons why they can do it anyway.

All of that finally brings me to my actual resolution: to finish the unfinished projects. That means I'm going to finally get the rest of my food storage out of my friend's basement (Sorry, Kelly!). I'm going to finish getting the garden put in. I'm going to finish that paper on Stephanie Meyer that I've started about a gagillion times. I'm going to get those half written blog posts dusted off and polished and posted. I'm going to catch up the scrapbook and my kids' journals.

Okay, well, I might not actually finish all those things, real life (and the crazies) might get in the way, but I'm certainly going to try. And I'm not going to sign on to anything else until I get those big things done.

Another part of getting the big things done is transitioning this blog a little big. I've wanted to write about a number of things here but feel like I can't. I guess in my brain I've defined this as a place where I am going to write about mental health issues and mental health issues only. I don't think that's really working for me anymore. So I'm going to widen the scope of this blog and lean a little bit more in the Mommy Blog direction. Don't worry. I'm not going to start posting things like "How to Use a Bulb Syringe" or "I made the most awesomest cupcakes ever!" or even "My kids are better than your kids because ______". It's more like I want to start blogging about my mental health in the context of my roles as a wife and mother and in the context of my church callings. Also, I need a place to organize my thoughts and post all the info I've been gathering about different things (like my son's experiences with eczema, gluten free diets, and sleep disorders and my oldest daughter's experience with hemolytic uremic syndrome). My blog seems like the most logical place to do it.

I hope the changes don't drive you away. If you skip some posts simply because they aren't interesting to you I totally understand. But it just seems like it's time for this place to evolve a little.

I'm interested, what are your New Year's Resolutions? Now that it's March how are you doing with them?