Along for the Ride

A Spouse's Experience with Mental Illness and Coping Strategies

We had what I considered a good marriage. Our family and faith were the focal point of our lives. Our six years together had not always been easy, but I was confident we could meet any challenge. Although I had once suffered from depression, I knew almost nothing about mental illness and never considered it would nearly destroy our family in the year that followed.

Certainly there had been signs a problem for some time-my husband, "William," had male bulimia as a teen and later behavior that baffled even himself. There was an incident when, while I was visiting my family, he visited a singles bar, condom in pocket. Another time he flew into a rage during an argument and crushed the children's training toilet. Another incident, again at a bar, where he became drunk and acted indecently with female patrons. And then twice when he charged thousands of dollars on our credit cards without my knowledge. Of course these incidents generated the expected amount of marital friction, but, occurring at the rate of about one per year, they were infrequent enough to attribute to stress or other external factors. William was generally cheerful and even-tempered; there was no place for this behavior in my assessment of him.

Looking back, I recognize several major factors that probably triggered William's breakdown. He was a graduate student, and his summer internship required a twice weekly commute from Los Angeles to San Diego. Because of the distance, this usually involved a total of four hours of driving and an overnight stay. I was an at-home mom with a new baby girl and two small boys. Living off William's graduate stipend alone, we were always short on funds and relied heavily on help from our parents. At the advice of my father, a broker and real estate investor, we transferred our life savings into a high-yield foreign investment. In a scandal that made the front page of the San Francisco Chronicle, the man who orchestrated the investment, a family friend and relative, disappeared with everyone's funds. Though our loss of five-thousand dollars was small compared to others, we were left shocked and broke.

The breakdown began as what seemed like a testosterone overdose. Several times a day William became obsessed over women and sex. Try as he might to rid himself of the thoughts, which he found repulsive and frightening, the stronger the thoughts became, and they were soon consuming several hours a day. In the middle of the night he would sneak into the living room and watch snippets of pornography on the scrambled cable channels. During the celebration of our sixth anniversary, while I shopped for champagne, William was slipping pornography from street corner vending machines.

Of course he kept this problem a secret for six months, leaving me only to wonder why our sex life seemed to vaporize into successive nights of rejection. When he finally confessed his problem to me, I was horrified. I do not know if the subject matter or the months of deception were more painful. He promised to stop-to do whatever it took to get our relationship back on track. Through our Bible study leader we arranged a meeting with the pastor and his wife. The meeting proved uneventful as William's sorrow at his actions and promises of change left the pastor convinced that no further intervention was necessary.

"But what if it happens again?" I asked.

"Why think that way?" the pastor's wife replied. "Why not think, 'What if it doesn't happen?' God's the one who's in control. Things are going to get better for you both. I know it."

I wanted to believe this too, but still felt that something was terribly wrong.

William was convinced it was a spiritual problem and rose every morning at 6 am to read the Bible for an hour followed by prayer. Even so, he continued an irregular pattern of compulsion and deception. Sometimes the compulsions involved buying a pack of cigarettes and smoking them all, even though he didn't smoke. Often he surfed the internet for pornography, and once he called a 1-900 sex line while drunk "to tell someone how it felt like no one loved me," he had explained. At my insistence, he started seeing a Christian psychologist. Despite weekly therapy, a six-week church program, a 12-step group for 'sexaholics', and even an 'accountability partner' the obsessions worsened. At times William feared he was possessed. Neither of us could escape the sobering realization that his sexual thoughts and acting out were becoming more and more serious.

"I see little girls out on the playground, and I get these really awful thoughts that scare me. Like, what if I'm a child molester?" William said one day.

"Are you telling me you have sexual feelings toward-little girls?" I asked, stunned at the thought.

William replied, "I don't think so-I don't want to be. But what if....?"

Our lives were soon revolving around William's obsessions and compulsions. I had to take all of his cash, credit cards, and checks so that he would not spend our limited income on pornography. He could not watch television or a bikini-clad woman in a commercial might trigger the obsessions. Once triggered, he might switch into a zombie-like state, preoccupied with the unwanted thoughts. Even the morning trip to work was complicated by the circuitous route he drove to avoid billboards of sexy women. I tolerated as much of his behavior as I possibly could, but swore that if he even touched another woman, much less a child, he would have to move out.

But the problems went far beyond sexual issues in a manner that was difficult to articulate. William was late for everything; he couldn't keep track of important papers; he forgot to pay bills, balance his checkbook, study for exams, and was even unable to attend to household chores. He started keeping a 200+ item computerized check-list to remind him to shave or put gas in the car. He had severe mood swings that ranged from a few days of optimistic, almost mania-like energy, to severe depressive lows when an attempted "cure" for his obsessions failed. When William was more himself he would confess to me all his horrible thoughts and beg forgiveness. Often these thoughts involved plans he had to seduce fellow students or women in our Bible study; other times feared he was homosexual, or that he might punch his supervisor, or that he might fail graduate school and lose everything. Occasionally he would question his faith, his sanity, and even his decision to be married. Trying as hard as I possibly could, I offered him continued reassurance and as much forgiveness as possible.

Communication, however was not a two-way street. If I even tried to express my feelings about my own pain or offered anything that could possibly be perceived as a criticism, I was confronted by a sudden and unpredictable personality change. Gone was the sincere, caring husband I had married (and frankly, this fellow was becoming more and more scarce) replaced with a cold, robot-like person who cared nothing of my plight. Tears were met only with a strange, wordless callousness. Other times William was frighteningly secretive. If I intruded at all he became fiercely defensive and even paranoid.

There was no way I could get through to him when he was like this. Anything I said would be ignored or forgotten. I tried hard to be the "perfect wife," hoping either my love would cure him or that at least he would realize that I wasn't causing his problems. Other times my efforts failed, and communication would break down into an all-night argument. Often he would withdraw completely, not speaking to me for hours or even days.

Oddly enough, William appeared cool and competent to everyone else. If one more person told me what a great husband I had I thought for sure I'd scream. Could it be, I wondered, that I am the one with the problem? What if I'm crazy and William is normal..?

During that time I found a modest part-time job and started our children in child care. This provided a much needed break from family concerns. Even so, most days I closed the door to my office, put on some music, and cried for half-an-hour. I begged God to help William and save our marriage. I was often depressed, and sometimes felt so discouraged that I wanted to die.

It had been a year since our problems began when I gave up all hope of finding answers in the church, psychology, or 12-step groups. Our friends had run out of ideas and were beginning to withdraw. Our oldest son was having serious behavior problems at pre-school. The pastoral staff at our church was tired of trying to help us. When sessions were abruptly cut off by a female pastor I had been seeing for counseling, I felt more alone than ever. The constant struggle with William's demon and the impending doom of our marriage left me emotionally and spiritually drained. And Christmas was only a few weeks away. William, in utter desperation, was handcuffing himself to the bed at night to keep himself from feared sexual indiscretions during the wee hours.

As a last resort William began to devote a single day per week to prayer and fasting-a final appeal to God for the nightmarish cycle to end. Meanwhile, I braced myself for the confession of infidelity which I expected at any moment. At the very least, I thought, our separation would put an end to the unbearable effort it took to hold our family together. I was so very tired. My doctor had prescribed increasing doses of tranquilizers for stress. To make matters worse, I was pregnant and didn't know it.

We had kept William's struggles a secret from our families, but I had lost the energy to continue the charade one Sunday when speaking to my mother-in-law on the phone. I confided that our marriage was in bad shape, and I didn't have much hope. She suggested I speak to William's sister, a psychologist in Pittsburgh.

"Pornography? Handcuffing himself to the bed? This is not like William at all," said my sister-in-law.

"He lies awake at night," I said, "sometimes for hours, obsessed with doing all kinds of awful things, like going to a top-less place, seducing his classmates, and stuff like that."

She told me, "Listen carefully, William has an illness called Obsessive-Compulsive Disorder. It's very genetic. They can treat it. Take him to the emergency room-now."

Could this finally be the answer we were looking for? Well, he has obsessions, I reasoned, and he has compulsions. Maybe, just maybe, this is it.

After waiting four hours in the emergency room, William was diagnosed with Obsessive-Compulsive Disorder (OCD) by the resident psychiatrist at UCLA's Neuropsychiatric Institute.

The doctor said, "We can do this hard way or the easy way, but I think you should check yourself in to the hospital." She offered him some admission papers.

William agreed. "Okay," he said, "where do I sign?"

William spent the next five days locked up in the hospital while doctors performed extensive tests and began treatment with medication and cognitive-behavioral therapy. His doctor was confident that the OCD was treatable. For the first time in months I felt hope.

Here are a few important things I have learned from my experience. I don't pretend to have mastered all of these points, but if you have a mate with a mental illness, perhaps you can benefit from my struggle.

• KNOW YOUR ENEMY! The more I learned about William's illnesses, the more I was able to understand his behavior. This enabled me to better empathize and become a more positive force in his treatment. Obsessive-compulsive disorder is an anxiety disorder characterized by intrusive thoughts followed by rituals aimed at warding off the anxiety-provoking obsessions. This explained the bizarre sexual thoughts and William's subsequent, drastic actions. His was a less common form of the disease, which was why his therapist had failed to identify it. William's hospital psychologist also felt he may have bipolar disorder, more commonly known as manic-depression, which explained the mood swings, as well as social phobia, which explained his extreme fear of criticism or evaluation. Our family therapist also identified a type of dissociative disorder -the reason William would seem to "check out" during marital conflicts. Although much of the time it felt like my husband was the enemy, the illness is the true enemy. If your spouse has a mental illness, arm yourself with as much information as possible. A full psychological evaluation is critical. Read books, talk to the doctors, and even take a class if you have time. The more you know, the easier it will be to sort out the illness from the one you love.

• GET THE RIGHT KIND OF TREATMENT. I've heard that it takes seven years from the time someone is begins to look for help for their OCD until they find it. Although William had been seeing a therapist for six months prior to his hospitalization, the treatment he was getting was completely useless for his type of disorder. Psychodynamic therapy, rooted in Freud's theories of conflicting inner impulses and childhood issues, is not an effective treatment for OCD. Cognitive-behavior therapy (CBT) on the other hand, which focuses on thought processes and changing specific behaviors, has a proven track record for many anxiety disorders. CBT is expensive and sometimes hard to find but well worth it. Also the judicious use of proper medication is essential. William was put on 150 mg of the antidepressant Zoloft, which is also effective for OCD. It may be necessary to make sure your spouse has been stabilized with medication before starting off with CBT. Sometimes it is important to make sure the medications are working before any 'cold turkey' can be served!

• DO NOT PARTICIPATE IN YOUR SPOUSE'S ILLNESS! I thought I was being supportive by offering continued reassurances and listening to William's confessions. However, I later learned that this type of participation only worsened his OCD. I have since heard of many cases where spouses have helped the ill member with his or her irrational rituals. Although it is important to not enable or participate in a ritual it is also important to let them finish their ritual or compulsion with out yelling, "Stop it!" Never say, "Can't you just quit doing that?" Talk to your mate's clinician about what your role in the treatment should be. Your behavior can effect your spouse's recovery for better or for worse. However, don't fall into the trap of thinking you can cure your mate. The illness is his responsibility.

• REMEMBER, YOU ARE THE HEALTHY ONE! Even months later, William would still question his diagnosis, then at other times he would insist that I had OCD too. When your mate is not thinking clearly, he or she may try to convince you that you are the one with the problem. You may question your own judgment at times. Follow your intuition and stick to your guns. Do not allow your partner's disordered thinking to effect your self-esteem.

• GET FAMILY COUNSELING. Keeping a family together is hard enough even when neither member has a mental illness. Family counseling has helped our marriage tremendously. Make sure you find someone who also has ` good understanding of your partner's disorder. Having a couples therapist who knows how to do CBT when necessary has really come in handy.

• GET SUPPORT! You can't do it alone, and you can't expect your impaired mate to meet all of your emotional needs. Maintain as many friendships as possible. Find a support group for yourself-I attend a monthly meeting for family members of people with OCD. This is a great source of education and coping strategies.

• FIND OUTSIDE ACTIVITIES. Because so much of my daily life revolved around my husband's dysfunction, other activities were critical. Find something that you like to do without your spouse. This will give a needed break and provide you with more energy for the next bout.

• HAVE REALISTIC EXPECTATIONS. Once William was out of the hospital and successfully participating in the UCLA NPI day treatment program, I was so impressed by his improvement that I often forgot that he was still mentally ill. About three weeks after has initial diagnosis I began to miscarry my pregnancy. When I asked him to take me to the doctor H was shocked and hurt when he suggested I go alone because he had so much work to do, even though he had taken ` leave of absence for the quarter. In retrospect, I can see how his anxiety impaired his ability to respond appropriately. (At the time, however, I was not so understanding!)

• HELP OTHERS. After several months of attending my family support group I found that I actually had something to offer others who were just beginning on the road to recovery. I was surprised at how good it felt to be useful. I later became involved with the OC and Spectrum Disorders Association (formerly the OC Foundation of California). I frequently correspond with others who are in need of advice and support. Helping others has given some meaning to what is unquestionably the worst experience I have ever endured.

• EXPECT SETBACKS. Although there are manx excellent treatments, a relapse can happen at any time. After a year of treatment, William's psychiatrist weaned him off of medication. Many of his symptoms returned, and he was too embarrassed to tell anyone for almost twelve months. When I found out about it, the shock was almost unbearable. Like many mental disorders, there is no cure for OCD. Accepting that there will be setbacks makes them easier to handle when they occur.

• RECOGNIZE PROGRESS. Especially during times of difficulty, I forget how far we've both come. Since William's initial hospitalization he completed a successful course of difficult CBT and earned a master's degree in physics. I have a better understanding of his illness, our relationship has improved considerably, and yet I feel more independent than ever before.

It's been two years since William's initial diagnosis. The first year was difficult and William's progress seemed painfully slow at times. Medical bills totaled over seven-thousand dollars after insurance, but the results were well worth it. Despite many ups and downs, William's functioning has greatly improved. He just passed his first oral exam, and is less than a year away from a Ph.D. He dreams of being a professor.

Though I'm grateful that we've made progress and found some good treatments, I reflect soberly on the losses and many unknowns. I lost my husband for over a year and still don't know who he is much of the time. I've lost many of my 'friends,' our church, my sanity at times, and even our unborn child. I realize that life has no guarantees, that my husband or children might wrestle with the same demon on another day. I hate the struggle, but I know I've come out stronger. Though I don't have any satisfying answers yet, I turn to God for strength. I try to deal with the problems as they arise, one day at time.

This article first appeared in The Journal, California Alliance for the Mentally Ill (CAMI), June 1998. For a first-hand account of this story, please see Escape from the Manhole, at this site.