Personal Accounts: Surviving and Thriving After Years of Misdiagnosis

For those who end up with the label of “serious and persistent mental illness,” my story is not that unusual. My early life was filled with difficulty; I was born premature with some of the usual health problems that entails, orphaned shortly afterward, and adopted. Then I survived a traumatic abduction. The abduction resulted in drawn-out criminal proceedings and long days in court sans guardian ad litem—all before the age of four. Depression and anxiety have been familiar to me from early childhood.

By adolescence, I was labeled a behavior problem. For the second time in my life, I became a ward of the court. A court-ordered assessment found that I was dangerously suicidal, and I was ordered to a foster home. At that unfriendly place, I first seriously attempted suicide. I was 16. I struggled with whether I should take an overdose of Excedrin or eat some Drano, and I chose Excedrin, thinking it would be more lethal.

Six years later, I began to manifest what were then called multiple personalities. This was never diagnosed, but the depression was obvious. I was put on two tricyclic antidepressants, neither of which alleviated the depression or my stress reaction. An inpatient doctor added a benzodiazepine to the mix to treat anxiety. Unfortunately, the doses were a bit too much. Also unfortunately, being so sedated added to my feelings of neglect, helplessness, and hopelessness.

I went to a community mental health center after leaving the hospital. I received the popular psychotherapy of the day—transactional analysis. This worked very well for me, and I reached a point of healing with the dissociative disorder to the extent that it has never bothered me again. I still believe “I'm okay, and so are you!”

That period of recovery lasted some time. I married and divorced in the 1980s. In the early 1990s, in the midst of a career change and my work toward a bachelor's degree, my family got hit very hard with cancer. My adoptive family is small: only my parents and my adopted brother. Within a 90-day period in 1993, my parents and I learned we each had cancer. We started having surgeries, chemotherapy, and radiation. Among the three of us, we had five major surgeries in six months.

Selective serotonin reuptake inhibitors (SSRIs) had hit the market six years before we were hit with cancer. My primary care physician was a kind and generous man who suggested I try one. He seemed more affected than I by what was happening in my family. I had not complained of depression. Nevertheless, he said, “Here, take this. It will make your feel better.” I complied even though, as a human development student, I knew that I was going through a huge adjustment. I began to gain weight and feel “foggy” immediately. The slight cognitive decline, difficulty concentrating, and short-term memory loss were bothersome because I was at the end of my fourth year in college and wanted to maintain my 4.0 grade point average.

I made it through that last year taking exams, writing my thesis, and having surgeries, radiation, and chemo. I received my B.A. in human development with honors. Then I moved from my Florida home to Pittsburgh to pursue seminary and graduate school. My dad succumbed to his cancer while I was at seminary. I had two more surgeries. Mom was not doing as well physically or emotionally without Dad, so in 1997 I brought her up to live with me in Pennsylvania. I managed to complete internships for the two programs, chaired committees at seminary, and worked part-time while taking care of my mother. Mom, my best friend and major support throughout life—and the woman who had made tremendous progress in her own recovery by addressing our family issues—died five months before I graduated from seminary in 1999.

In December of 1999, my brother received his own diagnosis of cancer and died within six months. I became the sole survivor of our small family.

I had trouble getting employment after graduate school. I was living on savings and a small inheritance. I lived on $10,000 of savings and then lost almost $30,000 in technology-sector stocks in the market crash in 2000. I can now spell “diversify”! I had already lost my identity as a wife in a divorce, then as a daughter, a student, and a sister—and finally I lost any sense of financial security. The precipitous plunge into depression was sharp and overwhelming. I attempted suicide many times, and I just wanted to join the rest of my family.

I had been a student for ten straight years after a career change in 1989. I was ready to begin my new life's work. What I needed most was encouragement to build my identity as a professional. I requested this help and support from mental health professionals for the next couple of years. But I was told that if I wanted to pursue my career, I could not continue to receive intensive outpatient psychiatric services—I had to accept my illness. Instead of supporting my endeavors to lead an independent life, they encouraged me to assume the identity of a disabled bipolar mental patient “who could never work again.” My hope for a bright future was excised because the future I had envisioned, worked so hard for, and went so deeply into debt for was apparently too stressful for me—or so they said.

Most of those services and the inpatient services that went with them were countertherapeutic to my recovery and healing. I needed to grieve and grieve hard. I needed to keep my wits about me and work through my losses. I needed to accept all of my life and move on.

I changed doctors when I moved to another part of town after graduate school, and the new doctor left off the type II designation in my chart. Consequently, he, his staff, and the other clinicians began to treat me as if I had bipolar type I. The mental health professionals convinced me to accept my illness and a new life role as a disabled mental patient. The papers were signed and I went on Social Security Disability Insurance.

The mental health professionals believed I could not work, and I believed them. I trusted them. Unemployment is itself a boring and depressing experience. It takes Herculean effort to not be overwhelmed by a sense of meaninglessness. Being impoverished causes anxiety on many levels. The effects of poverty grind away the human psyche and are devastating to one's personal identity. Losing the security and privilege of being in the middle-class was devastating to me. Becoming part of a lower socioeconomic group was filled with judgment and stigma. I no longer felt accepted by those I considered friends; I felt like an untouchable. My social calendar emptied; invitations to dinner parties and cultural events stopped. Direct-care staff who provided services for me conveyed to me that my aspirations to climb back into a comfortable lifestyle were grandiose and unattractively ambitious.

Instead of helping me get back to life, treatment consisted primarily in giving me drugs. As that first dear PCP had done, each successive psychiatrist gave me something he or she thought would “make me feel better.” Unfortunately, drug therapy mostly stopped me from feeling at all. Like a person addicted to illicit drugs, I stopped thinking about or feeling much of anything. Also, like a person addicted to drugs, my emotional and spiritual development stopped. I gained 90 pounds. I lost my identity as an attractive woman who was known for her fitness routine, who stayed in shape, and who was highly productive. The losses kept piling up.

The antidepressants and mood stabilizers I was being prescribed never did much to stop the grieving. The SSRI doses kept getting doubled. The extremely high doses of SSRIs along with several other antidepressants, of course, mimicked hypomania. I had never had a full-blown manic episode nor been hospitalized for one, nor had I experienced other negative consequences that come with manic or hypomanic episodes. I have never had a psychotic experience. Somehow, that did not matter. My thoughts were pathologized as if I were delusional. The very real fears that accompanied my move from the suburbs to the crime-ridden inner-city were not seen as adjustment problems—they were considered evidence of paranoia.

The great chase after mental and physical side effects began. Seven years after that typo in my chart, my own psychiatrist wrote up prescriptions for 20 medications at one sitting. Consequently, I became completely disabled by all of their side effects. I was miserable. Not only was my intellect a shadow of its former self, but my gastrointestinal system shut down. I was being poisoned from the inside out. The headaches and jaw pain were indescribable. My doctor would not help me titrate off of any of them. He said, “We shouldn't interfere with what is working.” Maybe he interpreted my lack of positive symptoms of psychosis as success.

So I did it myself. I never, ever advise anyone to do this. Titration can be dangerous, and I should have had medical supervision. I began extremely slowly.

It took me months of intense withdrawal from one drug after another. I had been a therapist for inpatients with co-occurring disorders, so I knew what was happening. Still, all the physical withdrawal symptoms along with the wild mood swings were almost unbearable. Finally, I grieved full force over the deaths in my family. And then a profound grief settled in when I realized I'd lost all those years of my life and potential. The lost potential hit me hard. I sobbed daily for many weeks. No one will ever know what I could have become or what I could have contributed had I not been incapacitated by so many heavy drugs.

I toughed it out, watched comedies, wrote in my journal, called friends, ate whole foods, and listened to music. I think my saving grace was my complete set of Beethoven's symphonies—played at high volume. I do believe I could actually conduct the 5th! I think Beethoven, like van Gogh, was one of us!

My mind, my personality, sense of humor, and appetites for food, music, art, books, and sex all slowly returned. I was me again. When I titrated off the SSRI, I lost the hypomania. I also lost the incessant thoughts of suicide. I still struggle with depression and anxiety periodically.

I can honestly say that I am grateful that I have had all these experiences. They have brought me to the deeply fulfilling purpose I now have in my life. My professional focus is on increasing the integration of physical, behavioral, and spiritual health care so that we may create communities of health and wellness where people recover with and from mental illnesses without the disability of the chronic health conditions that shorten our lives. All my education in human development, divinity, moral philosophy, the life sciences, history, literature, anthropology, sociology, and psychology is now being used along with my personal experience in recovery with a mental illness and as a cancer survivor of 18 years to be a participant in this reformation in which we are all engaged.

I am working on a paper about the paradigm shift to recovery and wellness viewed through the lens of a moral revolution. I hope that you may be able to read that at some time in the future.