‘The private struggle that defined my life’

Sarah Vander Schaaff, who has suffered from anxiety and Obsessive Compulsive Disorder, says while it is embarrassing to share her struggle, she hopes other people can learn from it. MUST CREDIT: Monica McInnes.

Sarah Vander Schaaff, who has suffered from anxiety and Obsessive Compulsive Disorder, says while it is embarrassing to share her struggle, she hopes other people can learn from it. MUST CREDIT: Monica McInnes.

Published Jan 17, 2016

Share

Washington - It didn’t matter what we officially called it, my psychiatrist said as he looked up from his notepad.

What I had was “worry in search of a mission”.

Within 40 minutes of speaking with me, he’d learned enough to accurately describe the private struggle that had defined my life. technically, there were names for what I had, at least according to the Diagnostic and Statistical Manual of Mental Disorders: obsessive-compulsive disorder and generalised anxiety disorder. But, as my psychiatrist told me, these labels were most helpful for research purposes. You could, he said, drive a truck through psychiatric diagnoses. And, throughout the stages of an individual’s life, the diagnosis can change.

My anxiety started when I was in third grade. I stood alone at the bus stop with a battery-powered travel alarm and two watches. I checked them frequently as I looked for the yellow bus to appear, fearing that it never would. My teacher called me a worrywart and my parents thought I was eccentric.

No one thought I needed help.

When I was older, Aids snatched the life of a beloved teacher, and I privately feared that disease and death could jump out from the dark. Instead, it was two men with a gun on a lonely subway, a mugging that made me susceptible to panic attacks in tunnels and dark theatres.

There were other moments that convinced me that life could suddenly go from safe to dangerous. That sunny day at work in September 2001, for one, when I watched the planes hit the towers and thought about the split-second decision I made earlier to not head downtown and vote.

But I didn’t need the prospect of large-scale terrorism to drive me into obsessive worry. No, I could find the possibility of disaster in much smaller moments: Was a fever a sign of meningitis? Did the pharmacist give me the wrong medication? Did I hit someone while daydreaming as I drove home and somehow not even notice?

Such intrusive thoughts are a mark of obsessive-compulsive disorder. It was after a doctor discovered a blue and green mole during an annual pelvic exam that I began to exhibit the other classic trait of OCD: repeated actions. For me, this meant checking my skin for signs of trouble. I’d check. I’d ask my husband to check. I’d go to dermatologists to check. And then I’d do it all over again. At my peak, I went to three dermatologists four times a year, convinced that each of them had failed to spot a lurking cancer. Between visits, I was absorbed in what-ifs, and I was never without worry.

About 2.2 million American adults are affected by OCD, according to the National Institute of Mental Health. About half of those cases are so severe that an individual’s ability to go to school, go to work or otherwise function in life is significantly affected.

OCD is often associated with anxiety, of which generalised anxiety disorder is a part. Many people with OCD have intrusive thoughts – ideas that are disturbing and alien. Then there are the compulsive behaviours, such as washing one’s hands multiple times an hour or going to check that the iron is off. These serve to decrease anxiety or manage the intrusive thoughts. But, in fact, they offer short-term relief and only encourage a compulsion and anxiety.

As I try to make sense of my relationship with anxiety and OCD, I think of a particular day when I was 17, just two years shy of the average age for onset.

It was an important day for me. I was scheduled to videotape two monologues for an acting competition. (I’d do well, too, and be selected to travel to Miami to compete with others from around the country as a National Young Arts finalist.)

But before any of that, I had to shower and get ready. I still remember the water beating down on me in the tiny stall and sitting on the black tile crying. Something inside was changing. Was it fear? Was it anxiety? Whatever it was, it would follow me to college, graduate school and auditions in New York. For years, I always had the sense that I was trying to regain the freedom that slipped down the drain on that fall day.

It’s hard to put a quantitative measure on the decline or failure in one’s ability to do a creative task. It’s not something that can be captured in points scored or races won. But as a young adult I flopped in auditions; I turned down roles I was offered, and I no longer found joy in the process of discovery and invention that had once been my favourite activity in the world.

If I had been slowly succumbing to anxiety’s hold, my decline gained speed after I was mugged at gunpoint on the way home from an acting class. I immediately signed up for a course in self-defence, and then several in journalism. I said goodbye to theatre and hello to a job in news.

There were other changes in vocation and in how I managed my anxiety. Some might be attributed to factors that influence many people’s lives: marriage, children, moves and an attempt to be flexible. I switched to teaching, and eventually to writing. And in many ways, I was always normal enough. I could leave the house, do my work, care for my children and socialise with friends. But my worries were never put to rest, and in my mind they were always justified.

It’s possible, I figured, that the dermatologist missed that one mole on my ankle and that I needed a second opinion. It’s possible that the new babysitter is actually a child abductor and she’s driven the kids across state lines. It’s possible that I left the stove on. It’s possible that the plane’s engines have failed and the flight attendants are pretending everything is okay but we’re all about to die if I don’t keep worrying about that sound I heard 10 minutes ago.

It was my husband, a calm and steady guy, who finally said he wasn’t going to put up with my need for constant reassurance. And most of all, he didn’t want the kids to grow up in an environment of anxiety.

When he cut the emotional tether, I considered my options. First, I envied a friend who was married to a dermatologist. She was so lucky to always have someone in the house who could examine an atypical nevus anytime she wanted. And wouldn’t it be great if I knew more commercial pilots? All I needed was a friendly voice from the cockpit now and then to let me know not to worry, and I’d be fine. Fortunately, I realised that if my private torture was now affecting my husband and potentially my children, I needed real help. And I needed to make progress.

The first thing I did was look at the list of doctors within my insurance network’s mental health plan. Many focused on addiction or were in rehabilitation facilities. Some were far away. Others had degrees from universities I had never heard of. I’d briefly been to one therapist on the list; I wasn’t convinced a second attempt would be much more successful. So I asked for recommendations from a friend whose husband had a debilitating form of OCD. And I asked a trusted physician, the one who delivered my first baby. Both told me how the industry worked: The psychiatrist I needed wasn’t going to be in a network.

That is, perhaps, one of the most controversial statements I can write in this essay as we deal with the larger issue of mental health care in the US. I am not in a position to say if it is a fact that the care I needed would not be found in my network of providers. But at the time, like many women, I was both the patient and the caretaker, so to speak. I didn’t have any energy to interview potential doctors. My OB gave me a name. He was supposedly a very good psychiatrist. He would be expensive. And it would be a month before he could see me.

This doctor knew his stuff and he was precise. This was not about talking it out or unravelling my childhood. This was about brain chemistry. He ordered a blood test to check my liver and thyroid, a precaution he takes before prescribing medication.

He started me on a small dose of an antidepressant commonly prescribed for depression and for anxiety. We scheduled a phone call to check in within a week, and follow-up appointments for the next month and beyond.

Meanwhile, I would meet with the psychiatrist’s colleague, a social worker who would offer cognitive and behavioural strategies.

This combination of medication and cognitive behaviour therapy is the best treatment for OCD, according to clinical psychologist Felix Vincenz, an expert in the field and associate director of the Missouri Institute of Mental Health.

My cognitive behaviour therapy involved doing what you might find absolutely normal: wearing a regular swimsuit to the pool.

I could not hide beneath a full-body rash guard anymore. At first, I had to expose my skin for only five minutes or only one or two days a week. I could still use sunscreen, of course.

I still wore my hat, and I could still go to a dermatologist, but only one doctor, and only every six months to a year.

Through this process of letting go of my compulsive behaviour, I learned that nothing terrible happened as a consequence. I learned to interrupt the impulse to cover up and to check my skin and have a doctor check it.

Things improved quickly. After about a month, I had the feeling that the lift in my mind, the one that used to shoot to the top floor of anxiety with the slightest provocation, now hovered somewhere in the middle. I was more able to live in the present moment instead of being tangled up in thoughts about death or disaster or failure. I went back to yoga, no longer finding anxiety in moments of quiet or trepidation in the shower, a place that once tempted me to look for malignant moles. I got on a plane without weeks of anticipatory anxiety. And I have now learned how to live with my overactive “reptilian” brain, thanking it for wanting to protect me with worries and fears but asking it to take a break.

I’d been in therapy as an adult before. There was the 93-year-old disciple of Anna Freud who told me my skirts were too short; then the kind but ill man who died a few weeks after I began seeing him; then his replacement, whose office was in a run-down hotel; and then the psychologist with whom I talked but made no progress.

I credit my husband for his tough love; my psychiatrist and social worker for their comprehensive care; and the friend who had been through hell and back with her husband for giving me blunt advice.

And I look at my family history and the choices not taken because of anxiety, and I feel fortunate that I live in this moment, when the suffering might be eased with less stigma, more-appropriate medication and an awareness of lifestyle changes that can support progress.

It is embarrassing to share my private struggle, but not so embarrassing that I don’t want someone else to learn from it that there are ways to ease the burden of anxiety and OCD.

I will admit that new fears creep in, especially recently. But I am aware of my tendency for catastrophic thinking and for channelling a worry into a compulsion. I don’t want to go there again. I know now that there is an alternative.

A few months into the therapy, we packed up the car and pulled out of the driveway to set off on a 1 440km drive. My husband turned to me and said: “That was the first time since we’ve been married that you didn’t get upset about how I loaded the car.”

You see, it was never about the car.

Or the stove.

Or the mole.

But it was always about letting go.

Washington Post

Related Topics: