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Column   |    
Personal Accounts: The System Stole My Identity
Tracey Lewiston
Psychiatric Services 2007; doi: 10.1176/appi.ps.58.10.1265
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Ms. Lewiston, who is publishing under a pseudonym, lives in the Midwest. Send correspondence to her in care of Personal Accounts, Psychiatric Services, 1000 Wilson Blvd., Suite 1825, Arlington, VA 22209. Jeffrey L. Geller, M.D., M.P.H., is editor of this column.

My only experience with mental illness was living with my mom when I was really young. She was diagnosed as having manic-depressive illness, which eventually was upgraded to chronic dysfunctional paranoid schizophrenia, then finally amended to schizoaffective disorder, bipolar type. I survived childhood by being "perfect." I learned to not have any needs; taking care of my mom and keeping her calm was paramount to my survival. She abandoned me in a car when I was ten years old, and I remained a "ward of the state" until I turned 18. All my self-esteem was gathered from the outside world. I believed as long as everyone thought I was great, I would be cared for and safe.

I got my first job in radio when I was 17. Two years later, I was the youngest director-producer ever at the CBS television station where I worked. At 28, I was on nine radio stations and a local television station as a news and traffic reporter, I had a twice-weekly column in the daily newspaper, and I wrote freelance articles for numerous community papers. As an adult, my identity and self-worth were based mostly on my professional persona. My biggest fear was turning into my mom and losing everything. As much as reality sucks sometimes, the world she lives in is far worse.

My desire to have a family clouded my judgment when I married at age 22. I knew my husband had weaknesses, such as demeaning all women, but I thought I could show him how great I was. Unfortunately, five years, a house, and two kids later, I was so miserable that I went to bed each night dreading the rest of my life. I left him in October 2003, after he was arrested twice for drunk driving and once for domestic abuse. Most of the time, he was jealous and controlling; it was only when I threatened to leave that he became apologetic and said he loved me. I convinced him to go to marriage counseling. He went about four times, but I met with my therapist for most of 2002 and part of 2003. This therapist helped me decide whether to stay or leave and what I could do to help my marriage, as well as what I could not control, such as my husband's drinking and abusiveness. I discontinued therapy after deciding to leave my husband.

In 2004, while still in the midst of my divorce, I was also dealing with being the lead character in a few of my mom's delusions. I also took in a relative's baby for four months when she decided she didn't want to be a mom after all. At my request, the baby was placed in a foster home, where he remains to this day. However, the financial repercussions of caring for him were huge. I had no idea how I would catch up. I also had full custody of my own kids, I was working three jobs, and I was functioning as a volunteer emergency medical technician. I always considered myself a mental MacGyver—not only did I keep myself stable, but I managed to consistently put out everyone else's fires, too.

For the first time in my life, I felt as if my brain was full and couldn't handle any more. I called a therapist. I met "Ms. Smith" on March 7, 2005, and she agreed to work with me under the condition that I promise to come to therapy; she was not going to invest her time and energy in me if I was going to come to just a few appointments and then stop showing up. She told me how much we had in common, as she also had an abusive ex-husband, she thought her son was an alcoholic, she went to Al-Anon meetings (she told me the place and time she attended), and she thought it would help me to go, too. She told me she was having money problems but was confident they would get better as she built up her client base, because she was new to this particular practice. At that point, I didn't feel comfortable with her. I didn't want to burden her with my issues; she had enough of her own. I think her intentions were to connect with me. Instead, it made me want to run out the door before I decided to try and fix her problems too. I left that appointment feeling more stressed out than when I walked in.

A few days later, after a phone call to my obstetrician-gynecologist, I was prescribed 1 mg lorazepam for sleep and anxiety. The bottle said to take "one or two every six hours as needed," or up to 8 mg per day. By day 2 on the medication, I was taking as much as the label said I could. Unfortunately, I didn't realize I was completely intoxicated. Four days later, my aunt brought me to an emergency center. It was while under the influence of this medication that either the emergency staff or Ms. Smith decided that I had "possible axis II issues," and I was discharged home with a diagnosis of "self-inflicted benzo[diazepine] poisoning and a suicidal gesture." Not once did I say I was trying to harm myself. I had no history of psychiatric illness.

Six hours later, I woke up on my kitchen floor, still dizzy and groggy, more coherent, but very confused. I called my obstetrician-gynecologist's office to ask how long I would be dizzy. Since I was still not making much sense, the nurse called 911 emergency services. I ended up at a different hospital in the city and was admitted to the psychiatric ward. They obtained records from the previous night's emergency visit. I assumed these records stated the overdose was not intentional, because that is what I told them. I later learned the records stated that I had "possible axis II issues" and that the overdose was a "probable suicidal gesture." Again, I had no history of suicide attempts or gestures, no history of drug or alcohol abuse, and no history of self-harm. I was hospitalized for two days and was given a handout for dialectical behavior therapy (DBT), a therapy for borderline personality disorder, and was told it would help. I read about it and didn't see how it would be helpful to me. I later learned that my lack of interest in DBT caused me to be labeled as "resistant to treatment" and as having "poor insight into my psychological difficulties."

The original stressors that were causing breakdowns in my coping mechanisms were still there, but worse. And considering that my biggest fear is going crazy, being in a psychiatric unit made the slope I was on even more slippery.

On discharge from the psychiatric unit, I was informed that my husband and his lawyer—I didn't have the money for my own lawyer—were going to court to get my kids because I had been in a psychiatric hospital and therefore was unstable. I spiraled downward faster and faster. I was depressed and hopeless and overwhelmed, and positive that I was going crazy. On April 14, 2005, a month after my first hospitalization, I intentionally overdosed; I just cried and swallowed pills for two days. I can't describe the total hopelessness I felt at that time. The thought of my kids snapped me out of it, and I went back into the psychiatric unit. I was there for three weeks. I spent most of the time talking about my childhood and trying to figure out whether I was crazy.

Upon discharge, I met the first outpatient psychiatrist I ever had. Here's where things really went wrong. Because of my low functioning level at the time and my childhood, I later found out I was labeled by nearly everyone as having strong axis II issues and being "borderline."

After I met twice with the outpatient psychiatrist, she told the crisis unit that she was getting very frustrated with my care and was getting ready to give me a 30-day notice of termination. Five days after my discharge from the hospital, she decided I would be best off at the state mental institution. I was handcuffed and brought there, where I stayed for eight days. She terminated our patient-client relationship, or "fired me" right there, saying I was too much for her private practice. The reasons that I was sent to the state hospital, I have now been told, were a result of "miscommunications."

Ms. Smith works with this psychiatrist, who also said she would no longer work with me. I had met her only three times. I found it incredibly ironic that I repeatedly told hospital staff that I was not comfortable with Ms. Smith, but they chalked it up to my "personality disorder." Yet a few weeks later, she refused to work with me, and that also was chalked up to my "personality disorder."

Being at the mental institution for eight days was by far the most traumatic experience of my life. It was like being around 12 of my moms. The day after the psychiatrist "fired" me, I was transferred to the local university hospital. This hospital's staff called the courthouse and said they did not believe I needed a commitment. I was discharged with nobody to talk to. I had just spent 32 out of 37 days in three different psychiatric hospitals. This all happened within six weeks of the lorazepam prescription.

In the next six months, four more outpatient mental health professionals refused to work with me. I read in my records some folks wanted me enrolled in DBT and didn't think any other type of therapy would be of any benefit to me.

I lost my career. I missed my kids so much, it was tearing me apart. I sold most of my possessions. I was officially homeless. My car was repossessed. Nobody would listen to me. The more phone calls I made, the more I begged for help, the more I was labeled. I was hung up on. I was told to work on my issues if I wanted to see my kids, yet not one person could tell me what my issues were or what I had done to warrant being treated so meanly.

In October, my insurance company finally found a therapist willing to work with me. I called him and asked him point-blank to be honest with me regarding what he was told about me. He said "significant psychiatric issues and borderline personality disorder."

The entire six months I was in the psychiatric system, I thought I was going crazy. I didn't realize that the reason people were treating me like I was a lost cause was because they thought I had long-term issues. I read online that it is quite common for people with borderline personality disorder to have a difficult time finding a therapist. So this was why I was having such a hard time getting anyone to listen to me. I decided to call the therapist I saw in 2002—2003 who helped me find the strength to leave my husband, even though I thought I was acutely going crazy.

The first thing I asked him was whether he thought I had borderline personality disorder. He said, "No, that never even crossed my mind. Why?" I told him what had happened in the previous months and how the other therapist was told I had the disorder. My records show speculation about "axis II issues" from the moment I entered the system, but there is no record of a formal diagnosis of borderline personality disorder. The crisis unit records indicate that my insurance company told crisis staff that "finding a therapist for this patient has been challenging due to her having borderline personality disorder." Also, many clinicians seemed to be communicating to each other I was borderline.

For the first time since I entered the psychiatric system, I felt like I finally found outpatient support through my previous therapist. I brought along my stack of records, and he wrote a letter to the divorce court stating he never saw a hint of borderline personality disorder in me, and I even had a complete psychiatric profile that showed no evidence of it. He said he saw no reason I couldn't have contact with or custody of my kids. He indicated there were significant mistakes made in my care and that I had been mislabeled. Finally, light at the end of the tunnel: I might not be crazy after all!

With that letter in hand, a few people involved in my care started listening too. I received a letter from one person that states that the psychiatric hospital was "clearly not the most clinically appropriate placement, and based on my past and now current functioning it seems likely that the diagnosis of a personality disorder was prematurely made and circulated among various components of the treatment team, and inevitably affected some of the decisions that were made."

Once I met with my old therapist who advocated for me, all my "issues" vanished as quickly as they had appeared seven months earlier. Within two months of meeting with him, I had a full-time job in a different career; my own apartment again; and best of all, as soon as I got in front of a judge, I was granted custody of my kids for 50% of the time, despite my husband's (and his lawyer's) request that they stay with him.

Because of this experience, I have had to completely redefine who I always thought I was, and I still have a long road ahead of me. Every single day I think about the events of that year. I will never be the same. I hope my story helps mental health professionals realize that sometimes the best way to help patients is simply by listening to them. There's a chance that your colleagues may be wrong. Listen closely.

I am now a full-time nursing student on track to graduate with a bachelor's in 2009. I have many letters from professionals stating that I do not have borderline personality disorder and that this diagnosis was suggested without longitudinal support during acute hospitalizations.

In a way, I was a pseudo-patient, and my "severe psychiatric symptoms" were brought on by how I was treated. I didn't have an "unstable sense of self" because I had a personality disorder. Instability emerged after waking up in a psychiatric hospital not knowing how this could have happened. I displayed "frantic efforts to avoid abandonment" when I was terrified at a state mental institution and told I was there because nobody else wanted anything to do with me. I was also presumed to be "splitting staff" because some staff thought highly of me and others did not. My records clearly indicate that the only difference between these two groups is that those who thought highly of me had taken the time to talk to me. Those who thought negatively about me had not.

In 2005, I thought my life was over. I thank God every day that I don't have any significant psychiatric issues, and I have compassion for those who do. I will never get back the nine months without my kids. I will never forget how confused, scared, and utterly alone I felt when I was treated the way I was.

Perhaps my story can serve as a lesson on how not to treat a patient. If a patient ever presents with sudden-onset borderline personality disorder, please take the time to listen and don't write the person off as a lost cause.

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