Dealing with Health OCD as a Teenager

I received a poem written by a 16 year old girl who suffers from OCD, and she gave me permission to write about it on my blog.  I feel kinship with her, since I was in the midst of health anxiety OCD at her age.  I didn't have the internet to look up symptoms, but I went to bookstores and libraries and read medical reference books.  I am including a few excerpts from Eliza's poem: 

OCD

In a crowd, it seems impossible to feel so alone . . .

I tell my friend I have a sharp headache,

And I wonder if she knows that the second class lets out

I will immediately look up symptoms

And pick the worst disease

And that I will convince myself that I have

A brain tumor

***

It’s this stupid disease,

That makes me obsess over a single worry,

It’s this stupid disease,

That makes me think I have a million others,

It’s this stupid disease,

That makes me hate myself

But I continue, and no matter how hard it can be

I get through it

And because the worry and fear overcomes me,

It just makes it all the more welcoming

When happiness

Knocks the wind out of me

Health Anxiety OCD is indeed the "stupid disease/that makes me think I have a million others."  I hated myself at 16, hated how quickly and intensely I would worry about pains and spots on my skin and symptoms of any kind.  I believed this was a defect in myself, that I couldn't control the worry.  

I had moments "When happiness/knocks the wind out of me" and these gave me a glimpse of hope that I could feel something besides fear.  

I had never heard the phrase "Obsessive Compulsive Disorder" or the acronym "OCD."  I knew I had anxiety, but that was it.  When I was 19 or 20, my mother was taking classes to become a counselor, and I picked up her DSM, a manual of diagnoses for mental illness.  I don't remember seeing "OCD" but "Generalized Anxiety Disorder" jumped out at me for describing much of what I experienced.  It was a relief that someone could describe this fear.  

The missing component was treatment, and it took about 15 more years until I was diagnosed with OCD and found an Exposure and Response Prevention Therapist.  There was a strong part of me that hung on, in spite of the fear, and I honor that part of myself and that of Eliza.  You are stronger than you know.

Review of Zelah Green: Who Says I'm a Freak? Young Adult Fiction about OCD

When the publicist for author Vanessa Curtis contacted me about possibly reviewing the young adult novel, Zelah Green: Who Says I'm a Freak? , I was intrigued, because I was a voracious reader as a teen, but do not recall any books about characters with OCD.

Zelah is in the confluence of pain between her mother dying, her father remarrying to a woman who doesn't like her, followed by her father disappearing, and her persistent need to keep germs away, and elaborate routines of cleaning, counting and physical gestures. My OCD, although present from age 9 or 10, flared when my father left and my mother was depressed, when I was 16, so I resonated with the overlap of the traumas and the rituals and the flood of anxiety, and the fear of being a freak.

Zelah is from the UK and through various twists in the plot ends up in a group treatment home for teens, run by husband and wife behavior therapists. I don't know how representative this is of the British mental health system, but it does provide a setting for Zelah's growth as she discovers other kids who are "freaks" and finds commonality of experience, and also is guided into exposure therapy for her rituals--purposely touching faucets, and toilets and not washing and moving at an incredibly rapid pace.

My main ambivalence about the book was the tendency of the therapist to dictate what step Zelah would take next in combating her OCD, and her relative quickness in doing what was asked of her. On the other hand, I did appreciate that the therapist understood Zelah's thought process, her fear of bad things happening if she didn't do her routines exactly right, and the focus on addressing the compulsive actions directly, rather than assuming that if everything was made right in her family, then her fears would magically disappear.

I remember at age 13 or 14, noticing that all the young adult novels I read were about unpopular kids, outsiders, with lives in turmoil or chaos. I wondered about that, how the characters seemed on the margins. Of course, I was on the margins as well, and I kept reading the novels, hoping for some company, some acceptance. A book like Vanessa Curtis's could have helped me feel less alone with my anxieties, and my OCD. The closest I came to having this was when I read The Best Little Girl in the World by Steve Levenkron, about a teenage girl with anorexia.

Here is a page from my list of books. I recorded the title of each one, which was probably a compulsion.

Built on Sinking Sand: The House of OCD and Health Anxiety

It was the summer of 2006 when I sank deeply into the OCD with a full scale health anxiety crisis. OCD thinking is like an elaborate structure built on sinking sand. It appears so real and solid and indisputable and all the while your life is collapsing underneath you, and the logic is built on inherently unstable ground. OCD is an entire industry of thinking with very little to do with the outside world, except for the grain of truth that it inevitably latches onto.

Even writing about this summer stirs up the OCD. Part of my compulsion to make the anxiety go away was to make detailed notes about my symptoms, in hopes that I accounted for every possible thing, so my impulse, when writing this blog post, is to include every detail. The anxiety began when I agreed to take a medication which might alleviate a symptom that I obsessed about frequently. I took the medication, and started obsessing that I was getting a bladder infection, which was another one of my health anxiety themes. After fixating on every bladder sensation, and agonizing about whether to call my doctor, I finally did and she got me in at the end of the day. It is common(though perhaps not recommended) to treat women empirically if they have bladder infection symptoms, so that's what she did--no urine test.

And that began an elaborate building of health fear, one level on top of another. Because I'd had a severe headache with one antibiotic in the past, I said I wanted a different one, and in dodging one fear I landed in another as I began to obsess about getting a yeast infection from the 2nd antibiotic, and called my doctor who prescribed meds over the phone. I was overwhelmed with a surge of anger at my doctor for not doing a urine test since I had several bladder infections that turned out not to be, and since strong feelings set off my OCD, I was on very shaky ground.

Over the next weeks the OCD was compounded and grew at an alarming rate. I went to a different gynecologist, who was near my house, who did a lab test and said I did not have a bladder infection, and gave me more meds for the supposed yeast infection. I still felt urgency in my bladder, and even more urgency in my OCD desire to know exactly what was going on in my body, and perfectionistic self-condemnation for not perfectly diagnosing myself or advocating for tests, or for calling a doctor in the first place. The OCD thoughts were all about my defectiveness, and my responsibility to make sure I didn't get a kidney infection, and the imperative that I never make a mistake, and that I would be haunted by the pain and discomfort in my body.

I was on a quest to get relief from my anxious imaginings and my fixation on painful sensations in my body. I found a new family doctor, who said if I still had bladder urgency that I probably did have an infection, and she wrote a script for antibiotics, and reluctantly did a urine test at my request, but when I panicked that I did not do the test sample correctly, she went into authoritarian mode and told me to not get myself worked up, to just calm down. Well, if I could do that, I think I would have already. . .I went and cried in my car.

So here I was trying to decide whether to take another antibiotic, without test results, and the OCD structure was growing, as I felt a surge of hyperresponsibility that if I got a kidney infection it would be all my fault, so I'd better take the antibiotic. By the end of that week, I couldn't sleep at night, and I went into the doctor on a Saturday. The doctor on call was much calmer and kinder, and she prescribed another antibiotic that would be less likely to cause insomnia, but this antibiotic wreaked havoc with my digestive system. I went back to the doctor on call who happened to have my test results, and once again it showed I didn't have a bladder infection but that I did have blood in my urine, and she wanted me to see a urologist.

By this time I was a mess. My therapist Molly was on vacation. I went to see the therapist on call, and told her how I couldn't get this right, couldn't figure out what was wrong with my body, that I needed to try harder. She sat quietly for a moment, and then said that it seemed I had been working incredibly hard to find out what was wrong, with multiple doctor visits and relentless researching on the computer. I was baffled by this. This did not make sense in my OCD world, where I was never good enough, never finished, never solved, never certain.

She wrote a few sentences on a scrap of paper, and gave it to me:

May I be filled with lovingkindness.

May I be safe from inner and outer dangers.

May I be well in body and mind.

May I be at ease and happy.

This was a glimmer from outside the windows of the house of OCD, the possibility of another way to view the world. Feeling body symptoms can be hard enough without the "inner dangers" of OCD. I was to descend further into my OCD, but I had a moment of reprieve.

*********************
Thinking about it now, this is part 7.5 of my Medication Series, since it was my first OCD crisis after ceasing to take my antidepressant.

Part 1: OCD and Medication Decisions
Part 2: Starting Medication while Struggling
Part 3: The Limits of Research in Medication Decisions
Part 4: My First Prescription for SSRI's
Part 5: Feeling it in the Jaw: Side Effects of Medication
Part 6: Being on Medication & OCD Weeping
Part 7: Wanting to Get off my Medication

Relationship OCD: Fear of Choosing the Wrong Person or Gender

My 21st anniversary of being with my husband is coming up. I remember our 3rd anniversary, as we sat on the floor of my dorm room, and I struggled to tell him my fears. I had just gone to a presentation by a "feminists against pornography" group, with a slide show of violent images found in magazines, and the images were stuck in my head. I felt a claustrophobic dread that I would always be trapped by these images, a barrier between me and living my life with any peace or joy.

I had been reading a book on women's friendships, and combined with the scary things I had just seen, my OCD went into overdrive trying to figure out if it was safe to be in a relationship with a man, whether I was making a mistake, showing extremely poor judgement. As my anniversary approached, the obsessing intensified, and permeated all my thoughts and feelings. Was I putting myself in danger? Was I stupid? Was I wrong? Would this man betray me or hurt me?

It's hard enough to have these questions as a 20 year old, in any context, but in the context of OCD, I felt crazy. My first date with this man was to hear a feminist folksinger. I had never met anyone who listened to me like this man did, and took my thoughts seriously. He was compassionate. But my OCD wanted absolute certainty that he wouldn't become a monster. My best guess would've been that no, this was unlikely, but the OCD whittled away at this knowledge, kept demanding I figure things out.

Maybe you should be with a woman? That would be safer. If you stay with this man, you are betraying your gender. Are you sure you feel something for him? Keep checking on this. Any sensations? You are so tense when he touches you, obviously this is a sign that you need to be with a woman. So many horrible things have been done to women by men. You'll become part of that. You will be in collusion and contaminated. What if you stay with him, but you are actually a lesbian and you will lose any chance of happiness?

So, there I sat on the floor, on my anniversary barely able to speak, crying, and my love thought I was breaking up with him. This was the essence of OCD--I didn't want to break up with him. I just wanted the anxiety and intrusive thoughts and endless exhausting dialogues in my head to go away, and to know for sure I wasn't making a mistake.

There's a lot this 20 year old didn't know. She didn't know she had OCD. She knew she was anxious, but assumed that was a sign of her own defectiveness. She didn't know that OCD attacks what we hold dearest, what cuts right to the core of our identity and self. She didn't know that if you constantly check to see if you are feeling anything, you will mostly feel anxiety and fear. She didn't know that some things are incomprehensible, like the violent acts done to some women by some men.

I'm glad that somehow I made the decision to stay with the man who is now my husband. That took a lot of courage, since it meant trusting my own judgment and living with the whole host of anxiety-provoking questions, with no support for dealing with my OCD.

Part 5: Feeling it in the jaw: Side Effects of Medication and OCD

It takes courage to start medication if you have health anxiety. At the time I didn't feel brave, but I had the good fortune of a husband who told me I was brave. There was some relief in making the decision to start an SSRI, rather than going back and forth indecisively, but in OCD fashion, a whole new area of opened up for obsessing. The first week or two on half a pill was anti-climactic, and oddly disappointing since the flip side of fearing instant bad changes is the hope for instant good changes.

My psychiatrist moved my dose up to a whole pill, and one morning I noticed my jaw felt tight. I'd had jaw pain in the past, and this was a "health anxiety hot spot" for me. I became intensely vigilant of every sensation in my jaw, and kept checking it, asking myself if it still hurt, which escalated my panic, because yes, it still hurt. I did a search in a medical database, and found a handful of case reports of jaw pain as a side effect of ssri's. My OCD was all over this--"How do I know for sure this is a side effect? Am I being oversensitive? How do I figure this out?" Finally I took the plunge and called my psychiatrist, no small feat since phone calls were hard for me.

She was at a conference, but returned my call that evening. Her compassion and thoughtful response was incredibly helpful. She asked me about the information I'd found, and said to send her the abstracts, because she'd like to read them. Although she couldn't say for certain if it was a result of the medication, she advised going back down to half a pill for a week or so. Her ability to respond with a middle path was a great model for me.

The medication was helping, so I was willing to stay with it and see if the symptoms abated. It's extremely challenging to practice trial and error and keep an open mind when you are suffering. The human desire is to find a solution NOW. Backing down the the dose before trying again with a whole pill worked. The jaw pain eased, especially after I took basic self-care actions. I got so stuck in checking the pain at first, and being afraid I was "crazy" that I didn't even think of laying off crunchy stuff, or avoiding biting into things.

Related Posts:
Part 1: OCD and Medication Decisions
Part 2: Starting Medication while Struggling
Part 3: The Limits of Research in Medication Decisions
Part 4: My First Prescription for SSRI's
Part 6: Being on Medication & OCD Weeping
Part 7: Wanting to Get off my Medication
Part 7.5: Built on Sinking Sand: OCD and Health Anxiety

Knowing when to Stop

Yesterday I took a walk at lunch in beautiful spring weather. I went a different route and realized that the streets cutting back toward work were all no outlet, and if I kept going, the next several blocks were all no outlet as well. I actually turned around and went back the way I came. This goes against the gut level desire to "finish" my walk, to do it right the first time, to never turn around, but affirms the wise part of my mind which sees that the "finishing" comes at a cost of exhaustion and being late.

I have come a long way. 7 or 8 years ago, my husband was out of town, and I had very little experience with this, since he'd been afraid to leave me alone with my anxiety, I decided to go for a walk at a local park, also on a lovely spring day. As I started to walk along the lake's edge, I started obsessing about when to turn around and go home. Non-OCD considerations would've been, 1)I'm tired 2)It's almost lunchtime 3)I have other things planned to do later on.

I'd been feeling freaked out about my husband's absence, and OCD compulsions have an anesthetic quality that I had used as a way to cope with painful feelings for so many years. So here I was, walking around a lake, getting more and more tired, telling myself that surely I was almost at the turning point in the path and would be headed back to the parking lot, and I needed to keep walking, because the thought of turning back filled me with an anxiety.

A remnant of my saner self pointed out I had no map, no idea of how long the walk around the lake was, that my feet hurt, I had no water, and no hat in the sun, but my OCD world constricted to one foot in front of the other foot. I was sweating yet chilled at the same time. I felt a surge of envy when I saw other people walking the trail, seemingly calm, out for a "walk" not an exercise in following a random thought.

There are points in the middle of an OCD compulsion where I am acutely aware that my actions are compulsive, and yet feeling an urgent need to continue in order to ward off the even more acute anxiety. When I finally limped to my car, my muscles were seizing up and I was in a state of utter self-loathing. Later I discovered that the path around the lake is 7 miles. 7 fricking miles. Looking back I can feel compassion for the intensity of my anxiety, but at the time I took this a sign that I was truly defective.

Part 4: My First Prescription for SSRI Medication

I last left my story of medication for OCD with Dr. Celexa in 2001, and his confidence that a med would fix any side effects I might have if I started on Celexa. Shortly after, I began researching whether Celexa was the right medication. I was terrified of making a mistake. In the midst of this, my therapist, Molly, started a session by saying, "This is going to be hard for both of us. I need to have brain surgery, and will be out for 6 weeks." OCD doesn't leave a lot of room for learning how to cope with the chaos of life. Yeah, I researched her surgery, and that anesthetized the anxiety for a fleeting moment. I had spent years researching things, and by the time I surfaced from whatever the current search was, life had moved on without me.

Nobody wants their therapist to have brain surgery. It is a scary, scary thing. Molly came through the surgery, and left me a groggy, anesthesia and pain killer influenced message on my voicemail that she was ok. I was still re-reading all the entries in the phonebook under "Psychiatrist" and realized there was one I hadn't called because she was farther away, but I had started driving again, and it occurred to me that I could get there. Dr. S. actually called me back, and could see me within a week. She had her office at her house, a McMansion on a cul-de-sac.

I sat on her leather couch, going over my questions in my mind, and as if this would somehow compel me to ask them, rather than mentally rehearse them in hopes of perfection, which would never come. She listened to my fears about side effects, and gave it to me straight. She said that she liked Zoloft, that maybe this was because the drug rep came by more often than other ones did, but she had clients who did well on it, and it had a short half-life, so if I had side effects, I could stop the drug and have it out of my system relatively quickly--not as abruptly as Paxil, but not as dragged out as Prozac.

Dr. S. said she'd start me on a low dose, 25 mg, and slowly titrate it up. I had done repeated searches on the concept of titration, so it was a relief to hear someone actually discuss it, though that didn't last long, since the OCD can always find a new concern. She gave me the prescription, on a slip of patterned blue paper, like the inside of a security envelope, and I went to the drugstore to have it filled. I bought a little guillotine to cut the pills in half. This was April of 2002. More to come.

Related Posts

Part 1: OCD and Medication Decisions
Part 2: Starting Medication While Struggling
Part 3:The Limits of Research in Making a Decision
Part5: Feeling in the Jaw: Side effects
Part 6: Being on Medication & OCD Weeping
Part 7: Wanting to Get off my Medication
Part 7.5: Built on Sinking Sand: OCD and Health Anxiety

Seeking Reassurance for my OCD Fears Part 2: My Husband

I concealed my anxiety from my husband as much as possible for the first couple years we knew each other. I was ashamed of my fearfulness. One summer during college, I moved in with him because I couldn't find a job. I had a blast of anxiety that I had a swollen lymph node behind my ear and that this meant I had cancer. Without a job, I spent hours obsessing, lost in anxiety. I went down to the tiny public library, with its creaky floors and looked at medical reference books, which gave a momentary hit of relief, and then the anxiety started up again. I finally told him about my anxious fears. It felt like confession. He had great compassion for my suffering.

My pattern became long stretches of anxiety, which I hid from my husband as long as I could, and then several times a year, I would reach such a depth of anxiety that I would confess my fears to him, and cry raggedly into his chest. One summer in grad school, I felt tingling in my fingers, and had a burst of anxiousness, and went to the library to read medical reference books, and saw an entry about Guillain-Barre Syndrome, which results in the nervous system attacking itself and patients can be completely paralyzed but still conscious. My OCD latched onto this, and dogged me with fear. We were getting ready to leave on vacation, and I didn't want to ruin it by admitting my fear, but when we stopped for lunch on the journey, I could barely focus on him sitting across from me. The anxiety had slipped me from my moorings. I couldn't eat.

Finally, I blurted out my anxiety, and I remember how sad he looked, as he took my hand in his, across the table. "Don't you want to go on vacation with me?" He didn't know what to do, and he was afraid that he had done something wrong. Later, when we got to our destination, I lay down, still wrapped in fear, and as I closed my eyes, listening to my worry over and over "What if I have Guillain-Barre? What if I am paralyzed?" I suddenly had the thought that if I became paralyzed, my husband would take me to the emergency room. There wasn't anything else to do. He would take care of me, do what needed to be done. I was still scared and shaky from all the adrenaline, but I had a flash of reality in that moment.

As I flipped through a newspaper, I came across an ad for a research study on anxiety disorders, which listed tingling and numbness of the hands as a symptom of anxiety. In that moment I had a choice to make. My best guess was that the tingling was from anxiety; Guillain-Barre was much less likely. The OCD still wanted absolute certainty that it wasn't Guillain-Barre, at the expense of being in the present moment with my husband, on vacation, being alive, rather than the living dead. I chose to stay as present as I could. I was scared, but I wanted to escape the tyranny of the anxious thoughts.

Related Post:
Seeking Reassurance from Others for my OCD Part 1

Skin Cancer Anxiety: Fear, Vigilance and All or Nothing Thinking

About 10 years ago, I noticed a small bump at the top of my ear, under the helix, and I'd fool with it, and it would bleed and then scab over. With my selective OCD hypervision, since the bump was hidden from my sight, I went at least 6 months before I started to worry about it. I did acrobatics with a mirror, but couldn't get a good view. I'd had several moles removed over the years, none of which were malignant, and I felt ashamed of my vigilance, and sad about the little white scars. But it was bleeding and never completely healed, and this was unusual. This was one of those things on a public health warning poster.

After a deluge of anxiety and indecision, I made an appointment. I'd seen this doctor several times before for anxiety symptoms--a gland I thought was swollen, a bladder infection that turned out not to be one, and had asked for a referral to a psychologist. I will credit him with telling me I'd done the right thing in coming to have him check it out, but then he said, "I don't know what it is, but it's benign. Maybe it's an infection." He put a dab of antibiotic ointment on it, told me not to traumatize it, and said if it changes, come back in.

This only stoked my anxiety, and my OCD need for certainty. To be told "I don't know what it is, but it's fine" was enough to cause a firestorm of fear. I felt too ashamed of my anxiety history to assert myself and say, "It's bleeding. I'm not gouging it, it just bleeds at the slightest provocation. I've had it for over a year." I may have mentioned some of these things, but I don't remember doing so. I decided after much angst to get a 2nd opinion from a dermatologist, but I never went. In the interim 3 months until I could get an appointment, I found a therapist, and my anxiety level went down, and I assumed that it was my anxiety causing me to second guess my family doctor, and rather than risk more humiliation, I canceled my appointment.

For the next 5 years, I kept checking the bump. It didn't change or get bigger. It just kept bleeding and scabbing. I'd go as long as I could without touching it at all, and feel sinking disappointment when it was still there. Finally, I decided that I wanted a second opinion, that it was ok to want this, in spite of my health anxiety history. I'd done massive research, reassured myself that I had very few risk factors. I was young, stayed out of the sun, and the bump wasn't exposed to the sun anyway, hidden in the curve of my ear, but I realized that my research couldn't diagnose it, and the research was sucking up my time.

I went to dermatologist who said, "I don't know what this is. But it's kind of odd and I'm going to biopsy it." A couple days later she called me to say it was Stage 1 Squamous Cell Skin Cancer, and that I needed to have it surgically removed with Moh's microsurgery. She was truly surprised that it was cancer. It's an odd location, and I have very little sun damage. Every follow up appointment she tells me what a freak occurrence this was.

My OCD was all over this in a flash. "See I saved your ear! You have me to thank. Keep obsessing. Don't let up." But after careful thought, I know that it wasn't my obsessing that protected me. My all-or-nothing thinking, common in OCD, said "I must always be right about my diagnosis before I go to the doctor or I am defective. Just keep researching."

It was my struggles with OCD in the past that made me second-guess my decision to get a second opinion. I felt I wasn't reliable, that in fact I was crazy. Part of being human though, is not knowing exactly what is happening in your body, and guessing wrong. And doctors, being human, sometimes assume that anxious patients don't actually have anything wrong with them, even when they do, and there is research that family doctors aren't necessarily good at identifying non-Melanoma skin cancers. I haven't researched my ear lately. The health anxiety kicks up every so often and insists I need to research, but research wouldn't have saved my ear. That is an illusion.

Talking to OCD: The Hazards of Talk Therapy

Before I started Exposure Therapy with my current therapist for my OCD, I had been in psychodynamic therapy for 6 years with Molly. She was a good therapist. I changed my life in many ways while seeing her. I started driving again. I began making art. I became closer to my husband. I began to believe that I mattered, and joy was possible. I wouldn't have recognized myself if I could've seen into the future.

But the OCD persisted. Although Molly was the first therapist, among the 8 previous ones I had seen, to recognize I had OCD, her strategy was to encourage me to avoid my triggers, and to offer reassurance. She had a down to earth grittiness mixed with intense compassion, and enough of this quality allowed her to provide some Exposure Therapy inadvertently by guiding me to do things rather than intellectualize everything. She had no training in Exposure and Response Prevention Therapy, but most therapists are lacking in this training.

There are aspects of my therapy that dragged on in excruciating barrages of OCD. It was like running a race through quicksand, expending great amounts of energy and getting deeper and deeper into obsessing. This can happen with any therapist, but Molly's inexperience with treating OCD contributed to a feeling of hopelessness. If she could help me with so much of my life, but the obsessing remains, then what was I doing wrong? My perfectionism said, "You are defective. Just try harder. Obsessively research OCD."

When I finally joined an OCD support group a couple years ago, I was saddened and angered by the number of people who had been in psychodynamic therapy for years as they progressively became more entangled in their OCD. One woman had intrusive thoughts that she might hurt a child, and after 12 years of therapy, had quit her job as a teacher, was terrified of having a child of her own, and sinking deeper and deeper into depression.

Telling someone over and over that they are not a dangerous person, and feeding the OCD desire for absolute certainty is not benign. Directing a sufferer to dig for the roots of why they are having these thoughts, and what they mean is not benign. The harder the search, the more room for the OCD to escalate as the brain gets the message, "These thoughts must mean I am a bad person, since I am trying so hard to disprove them."

The OCD needs to be addressed directly, or it will go underground and the unraveling of lives will continue. It's one thing as a starting point to tell someone that research shows that people who have intrusive thoughts never act on them, but it's another to expect that that will magically make the OCD go away. OCD isn't about rational thought; it's unalloyed fear.

Part 3: The Limits of Research in Making a Decision about Medication

It's 2002, and the psychiatrist who put me on his waiting list finally called to schedule an appointment. I sat in a leather chair, feeling like a willow trembling with the slightest breeze. He was a soft spoken man in his 50's, and he paused after I spoke as if to absorb what I said before responding. He concurred that I had a diagnosis of OCD, and felt medication could help me, and that perhaps after a year or so, my mind would "reset" itself and I would be able to taper off.

He proposed Celexa because it was new and not supposed to have sexual side effects. OCD thinking had seriously stunted my ability to approach anything near intimacy with my husband, and we had just started making some progress because of working my therapist, who I will call Molly. I was terrified of sexual side effects, and this was a major obstacle to my taking medication. I'd read numerous articles on the subject from the medical literature, plus enough posts on internet bulletin boards to fuel up my obsessing to the flammable point.

His assurance to me was that if I did have sexual side effects, he would put me on another drug, Wellbutrin, and this would correct the problem. As much as I liked this doctor, his solution was like something from a farce. Take one woman who is very afraid of taking medication, and tell her that a drug will solve any problems created by the first drug. . .

But I still knew that I couldn't go on the way I had been, with rituals consuming a lot of my time and energy. I told him I would need to think about it. I believe I did something actual thinking at the time. This is an important distinction. Obsessing and compulsively looking up medical articles is not the same thing as thinking about something, or problem-solving.

I'd read enough to know that some people were helped by SSRI antidepressants, and that the only way to know if they would help me was to try one. This is incredibly difficult for someone who hoards information to accept, that some things have to be experienced rather than researched, that sometimes you need to make a decision, and you will never have enough information to make a perfect decision. But I was on my way to making a decision.

Related Posts:
Part 1: OCD and Medication Decisions
Part 2: Starting Medication While Struggling
Part 4: My First Prescription for SSRI's
Part5: Feeling in the Jaw: Side effects
Part 6: Being on Medication & OCD Weeping
Part 7: Wanting to Get off my Medication
Part 7.5: Built on Sinking Sand: OCD and Health Anxiety

Part 2: Starting Medication while Struggling with OCD and Insurance

I am fortunate to have a job with health insurance coverage, but "behavioral health" was only grudgingly included in any form, complete with a limited network of therapists, and no psychiatrists. I already had a therapist when I started considering medication, but of the sparse list of psychiatrists in my area, many didn't want to do "medication management" if they couldn't also counsel me in some way, others weren't taking new patients, or didn't return my calls. One called me back and had a 3 month waiting list, but at least was willing to put me on it.

Willingness to take medication was already tenuous for me at best, and the maneuvering required by my OCD and social anxiety was a serious challenge to following through. It's hard to cope with:

1)I really don't want to do this.
2)It's going to take quite a bit of effort to do what I don't want to do.
3)OCD is having a field day with all the uncertainty, cultural debates about overmedication, and an intense fear of trial and error.

The only other psychiatrist I'd ever seen was 7 years previously, a requirement by a previous insurance company that to get any talk therapy I had to see a psychiatrist first. He prefaced his diagnosis of generalized anxiety disorder with "You're not going to like this, but I think you need to consider taking medication." At the time, SSRI's weren't generally being used for anxiety disorders or anything else for that matter, and the drug he suggested was Buspar, which got mediocre reviews.

I felt defensive, hearing in his tone that "psych patients don't want to take their psych meds", that he knew me thoroughly after just 45 minutes, and I was a stereotype. At that point, I didn't drive, and he gave me a referral to a therapist remote from where I lived, and only accessible by car, which seemed like sending me to another country altogether.

OCD as a disorder is very adept at latching onto whatever is at hand, and waylaying you with a grain of truth, just enough truth to make itself plausible, needed, useful. It is wise to be an informed consumer, so I felt justified in compulsively reading about Buspar, to the point of exhaustion. OCD will demand an answer in advance to the question: Will this work for me? The psychiatrist was patronizing, and that sucked, and OCD was more than willing to say "Don't do anything. Just keep obsessing."

Ironically, when I was considering medication 7 years later, I was fixated on getting it from a psychiatrist because I had compulsively researched the topic, and was afraid that my family doctor wouldn't choose the right medication or dose.

Related Posts:
Part 1: OCD and Medication Decisions
Part 3: The Limits of Research in Medication Decisions
Part 4: My First Prescription for SSRI's
Part5: Feeling in the Jaw: Side effects
Part 6: Being on Medication & OCD Weeping
Part 7: Wanting to Get off my Medication
Part 7.5: Built on Sinking Sand: OCD and Health Anxiety

Part 1: OCD and Medication Decisions: SSRI Antidepressants

I've been taking the maximum dose of an SSRI Antidepressant for the past 3 years. Before that I was on the lowest dose of an SSRI for 2 years. This was one of the most excruciating decisions I've ever made, and somehow I managed to make it in the midst of a hurricane of OCD symptoms. That is an act of grace! When my previous therapist suggested the possibility of an SSRI, obsessing went to tidal wave. I already had only a scrap of dry land to stand on in the swirling waters of my mind, which is why the therapist proposed medication. My intense revulsion and fear led her to suggest acupuncture, which was not an object of my OCD anxiety.

It took me a year to choose to take medication. A year of compulsive research, and increasingly time-consuming mental rituals of trying to figure out whether I should take them, which one would work, and battling my fear of making phone calls in order to find a psychiatrist who would be able to prescribe them for me. So let's recap:

1)I have health anxiety, so I was petrified by the possibility of side effects
2)I was prone to existential OCD, and ruminated on whether I would no longer be myself if I took medication. I wanted to know how I would feel without a constant barrage of OCD, but I couldn't actually replicate it in my mind, which totally freaked me out.
3)I I wanted absolute certainty, in advance, that I would get on the right medicine, at the right dose, and that I wasn't crazy to consider taking SSRI's.
4)I had severe OCD issues with making decisions, and the decision points kept branching off infinitely--should I take the med? Who should I get the med from? Which med? Which dose?
5)I felt that my therapist was overwhelmed by my obsessing, and after my initial panic when she suggested meds, she didn't know how to help me make a decision.

Here was the bedrock:
Obsessing about medication was leaving me little time to do anything else with my life.

I had the revelation that it was possible that taking medication would stop the obsessing about medication.

I was full of fury about this. I hated this. I felt trapped. I couldn't go on as I was. I was exhausted. But what if taking medication meant I was unredeemable? That I was wrong? I had intense dread, as if taking medication was the equivalent to choosing to go to hell. I don't mean this in any specific theological way, but rather sheer terror.

It's hard to think back to this time. I found the courage to take a chance on medication, which calmed the constant feedback loop of OCD enough to give me some breathing room, and then later, to do Exposure and Response Prevention Therapy. I'll write more about this experience. It's more than fits in one post. But if you are struggling with a decision about medication, know that my heart goes out to you.

Related Posts:
Part 2: Starting Medication While Struggling
Part 3:The Limits of Research in Making a Decision
Part 4: My First Prescription for SSRI's
Part5: Feeling in the Jaw: Side effects
Part 6: Being on Medication & OCD Weeping
Part 7: Wanting to Get off my Medication
Part 7.5: Built on Sinking Sand: OCD and Health Anxiety

Indecision at the Library

I loved going to the library as a girl. My father was willing to take me since he was always reading, and needed his own fix. I'd get 10 or 12 books and line them up along the side of my bed, a wall against anxiety, fear and parents who could barely take care of themselves let alone me and my sister. OCD latched onto this love when I was in my 20's and still reappears, like today, when dh and I went to the library. I'd already started the day with intrusive thought #1, "You've ruined your day by websearching for 1/2 hr while eating breakfast." I'm savvy enough to recognize that this is a thought, not necessarily reality(though it could be, who knows), but still scared enough to want to do a thorough autopsy and determine if I have indeed ruined my day.

At the library I started strong, but then moved to the fiction section and couldn't find the right book. I started the "searching without cause" dance of indecision. Look at every book on a section of the stacks. Pull multiple books off the shelf and flip through them trying to decide if they will be disappointing. Pull some of the same books off again. Scan the titles slowly, in case I missed something. I believe if you mapped out my footprints like do with dance instruction, the ground would become obliterated with all the repetition and retracing. It seemed an eternity, but according to my dh it was about 10 minutes.

He came over and asked me if I was done, and I took my out, and said yes. I was on the verge of saying, "No. I wasted 10 minutes and didn't find anything, so I need to rescue those 10 minutes by searching for another 1/2 hr." I think this is referred to do as "sunk costs" and you can't get that back, although OCD would like me to think it is entirely possible and I am defective in giving up.

Trips to the library work best when I go in ready to flip a coin if I am stuck on a decision, and to randomly pick a few books without knowing for sure that they are "right" and generally taking my chances. OCD takes a lot of energy. I was ready for a nap when I got home, and had some OCD backwash about my imperfections, but I'm on to the idea that I can spin straw into gold by looking at the same books over and over.

It's hard to imagine I didn't drive for 12 years

I learned to drive at 15. I had the spectre of perfectionism looming over my lessons, where I assumed that I should be able to just learn without trial and error, and that something was seriously wrong with me because I did indeed make errors, like changing lanes without putting on my signal. My instructor was patient, and even gave a particularly riled up driver the finger when I was struggling along. I started a list of all the driving mistakes I made, and felt overwhelmed with all I had to fix. I kept driving through college, maneuvering a Chevette, which had absolutely no oomph after 35 mph. Then on to driving a van as part of my workstudy.

But when my husband and I got married during graduate school, his car was a stick shift, and I had learned on an automatic. I only had one experience with a manual transmission, and that was the day I got my driver's license and my father took me out in his tiny Honda, and expected me to know how to operate the clutch. It was the longest block of my life. I started by rolling backward and ended with much lurching, and felt entirely responsible for my deficiency, rather than realizing my father was expecting me to learn by magic.

My husband took me to a parking lot with the stick shift car, and I was sufficiently scared of making any mistakes that I didn't ask for another lesson. In the meantime, my husband was more than glad to drive me anywhere I wanted to go. He'd wait for me, find a place to sit or walk. When we got a new car 5 years later, I asked that it be an automatic transmission so I could drive if I needed to. But after one nerve wracking trek down to the grocery store, with every muscle tense, and my hands clamped on the steering wheel, I shied away from driving again.

Later, my husband told me that he was so willing because he was afraid that if I had an accident while driving, that it would send me over the edge with my anxiety. For 12 years we did everything together, "joined at the hip". Anxiety can tell you something important, an actual threat that needs to be heeded, but parasitic anxiety lives only to perpetuate itself. Much of my perfectionism was a child's way of dealing with the world--"If I am perfect, then I will be loved. Don't ever make a mistake." And the OCD latched onto this, amplifying the fear. I couldn't imagine myself driving, and therefore, until I could be certain I could drive, I avoided it.

OCD Flashback #2: Verbatims

I was 19, and had my first boyfriend. We would have long conversations on the phone, and then after I hung up, I'd work on reconstructing the conversation in its entirety. I filled scraps of paper with keywords. If I could not remember the order in which something was said, or what brought up a particular subject, I would sit there, frozen, going over it, hoping to jar the elusive chronology loose, dredge up the missing details. If I could not remember every line, I would feel a tightening in my chest, a vertigo of fear and anxiety.

The thought of losing even the smallest scrap of conversation drove me to document everything. I was hugely frustrated when I discovered the keywords were not enough to remind me what they were about. I knew this need to reconstruct was not normal. It ate up a lot of time and mental space. I half-heartedly wrote that if I wanted to be a therapist, at least I would be very good at writing verbatims of case sessions.

I was all alone in my fears. I couldn't tell anyone what I was doing. They would think I was loopy. I was living in a new country. I was homesick. My father had left. I really never expected anyone to love me. I was afraid of losing this boyfriend. OCD latched onto this with a vengeance--Just write it all down. Capture it. Preserve your relationship by hoarding every word.

Related Post:
OCD Flashback #1

OCD Flashback #1

Writing my post yesterday sent me back to when I was 13 or 14. I'd go to the mall, by myself, and circle the food court trying to decide what to eat for lunch. I had a big heavy winter coat on, mostly likely puffy. I'd keep circling, reading every menu, more than once. Being indoors with the dry heat blasting, sweat would start to roll down my sides and into my waistband. I'm sad thinking of this poor girl and how exhausted she'd be by the time she finally ordered something for lunch. The food court was like a spot for OCD galactic meltdown. Not only did I need to choose where to get my lunch, but then which menu items.

In my 20's and 30's, if I had a day off, I'd become ravenous putting off lunch because I wasn't certain which task was "best" to do at any particular time, and if I did stop to eat, then I would have to decide what to eat, whether to eat at home or go out, and if I went out, I had a gauntlet of OCD questions to deal with--which would be the right place to eat? How would I know it was the right place? What did I have yesterday? Will I repeat myself?" All the while, hungry, not thinking clearly, sore footed, and generally frustrated with myself. A bone weary tiredness and a gigantic energy suck.

I loved places where I found something I liked, and could get it every time and it always tasted the same. This would be like a short cut to heaven! But life being what it is, nothing is ever completely consistent, and I am not psychic and cannot predict if the cook is having a bad day, and there is no Guidebook to Exactly What I Should Be Ordering.

I felt at war with myself. Part of me would just be "Order something already dammit. I'm hungry. I have other things to do." And the OCD would be going, "You will feel dread, doom, and not be able to focus on anything else if you pick something wrong, and it will suck up all the rest of your free time trying to make the dread feelings go away." Another sneaky slide into "obsessing about obsessing."

My ERP therapist used to work in a town with an incredible independent donut shop, which I would drive by on my way home, and I would stop and always get two donuts, even if I really was only hungry for one, because if one of them was disappointing, I had a back-up donut. The thought of boxing myself in with just one choice was panic inducing. I. can. not. make. a. mistake.ever. OCD will erode the most basic pleasures of life, including eating.

Related Post:
OCD Flashback #2