How the Stigma Against Personality Disorders Nearly Killed Me
Editor’s note: If you experience suicidal thoughts, the following post could be potentially triggering. You can contact the Crisis Text Line by texting “START” to 741-741.
One year ago, I was in the depths of a severe depressive episode from what my psychologist and primary care doctor agreed was severe recurrent major depression. I’ve had a lot of depressive episodes but this one was a doozy, with especially severe suicidal ideation. I resisted medication for weeks, hoping that any day I would turn the corner and it would start to improve. Finally, I caved and realized I should start on an antidepressant. Since I also have chronic pain from Ehlers-Danlos syndrome (EDS) that was untreated at the time, I thought it made sense to try an SNRI since it can treat both depression and pain.
Unfortunately, there is a shortage of psychiatrists where I live. I didn’t care to return to the psychiatrist I’d seen previously, and there was an eight-week wait until my intake appointment with the new psychiatrist I picked. Now desperate to start on medication and at the urging of my therapist, I made an appointment with my primary care doctor. He agreed that an SNRI was a good choice for me and started me on one.
After 48 hours, I felt better enough mentally to go on a little adventure with my boyfriend, despite the side effects making me feel weak and sick. By day four, I felt so, so much better. The chronic pain I’d been living with for months melted away. I had so much energy that I did housework for two hours straight. The next day was even more extreme. Instead of just having energy, I couldn’t stop moving. For five hours, I cleaned, organized and did random chores. Things I’d been keeping for the sentimental value no longer held any meaning and I tossed them in the trash. I tried to talk to my boyfriend when he got home from work and the words just poured out at lightning speed. I felt on top of the world and wondered out loud where this medication had been all my life. At the same time, part of me knew this wasn’t “normal” and wasn’t healthy. One of my friends joked that the medication had “made me bipolar.”
After a couple of days of this, my mood started to change. I still felt like I was overflowing with energy, but suicidal thoughts began to creep in. Now I was no longer cleaning for the fun of it; I was cleaning to distract myself so I wouldn’t turn that energy toward something far more deadly. My friends’ concern grew, and we started discussing whether I should maybe go to the hospital. I resisted. I was afraid of the hospital.
Finally, 10 days after starting the medication, I caved. I was having impulsive suicidal thoughts every couple of minutes. I knew I couldn’t stay safe without someone watching me constantly. I packed for the hospital and then called my therapist, who had just got back from vacation. She agreed I should check myself in for my safety. She told me to ask them about bipolar disorder and whether I could be having a manic reaction to the new medication.
My boyfriend and best friend took me to the emergency room. Checking in was simple, but then the waiting was the hard part. I saw a wonderful case manager, who quickly agreed I should be admitted to the behavioral health ward. Unfortunately, they didn’t have a bed open, but they expected one within a day or two. Meanwhile, I would have to stay in the ER under constant supervision. I talked all night to the doctors who were assigned to watch me, and then in the afternoon after an awful panic attack, a room opened and I was officially admitted to the hospital.
The next morning, I saw a psychiatric nurse. I told her about my therapist’s suspicions about bipolar disorder. She blew me off and told me I simply had an adverse reaction to the medication. She put me on a different one after I told her I had taken that in the past and tolerated it OK.
As well as group therapy, the program I was in offered individual sessions with therapists on request. I asked to meet with one of them. I talked about my chronic suicidal ideation that plagued me even on my good days, and about the abuse that caused my complex post-traumatic stress disorder (C-PTSD). I also mentioned that my therapist had told me a couple of times that I had “borderline traits,” even though she did not at all think I had borderline personality disorder (BPD). He told me to stop living so much in the past and the future, but to focus on the present.
A couple of days later, towards the end of my stay, one of the therapists came into my room. She wanted me to sign off on my diagnoses. On the paper was written:
Major depressive disorder (MDD), recurrent, severe.
Anxiety disorder, not otherwise specified.
Personality disorder, not otherwise specified.
I was surprised. I had only mentioned what my therapist had said about borderline traits in passing, and only once.
“I’ve heard a personality disorder diagnosis can be stigmatized,” I said. “If I have this diagnosis in my medical record, is it going to affect my care?”
“It won’t affect your care at our hospital, and you don’t have to share your records with anyone else if you don’t want to,” she said. Satisfied with this answer, I signed the document. The next day I was discharged.
It soon became clear that the second medication was not working how it should. Instead of feeling constantly energetic, now I was having severe mood swings. I would be so severely depressed I would decide to kill myself and tell my friends goodbye. Then, a couple of hours later I would be bursting with happiness, singing and dancing around the kitchen. After two weeks of this, my therapist recommended I return to the ER since my first appointment with my new psychiatrist was still three weeks out.
Unfortunately, when I arrived at the hospital, my mood was on an upswing. The whole tone of the visit was different from the moment I walked into the ER. Instead of taking me back immediately to the same waiting area in view of the nurses’ station, they told me to wait in the regular waiting area without anyone to keep an eye on me except my friend. When I was put in a room, again my friend and I were left alone.
I saw a different case manager this time. I could tell when she walked in the room that she had already made up her mind before I even opened my mouth. I tried to convince her I was a danger to myself, that the medication was giving me terrible mood swings, that I’d had severe suicidal behavior three times in the two and a half weeks since being discharged from the hospital. She didn’t care. She told me everything I was describing was in line with my “personality disorder” and the treatment was therapy. I told her I understood my normal behavior isn’t “normal,” but this wasn’t even my normal. I explained I was in therapy and my therapist was the one who told me to go to the ER. She just repeated her belief that everything was caused by my personality disorder and I wouldn’t be admitted. She said to come back when I was “actually suicidal.”
I felt devastated. It took so much mental energy to get myself to the hospital, and then I was completely disregarded and treated like I was just attention seeking because I was just some girl with a personality disorder. I was so angry, but then that anger quickly turned to crushing despair. I decided at that moment that I was just going to say whatever it took to get home so I could kill myself. It was shockingly easy. She asked if I was a threat to myself; I said no. She asked if I felt safe; I said yes. Even though my tone was completely different, now she seemed to believe everything I said. Not long after, I walked out the doors of the ER to my friend’s car.
My friend was clearly concerned. She tried to get me to talk on the way home, even asking if I was planning to kill myself. I denied everything, said I was fine — anything to just get home so I could make the last decision I would ever have to make. I knew exactly what I would do as soon as I walked in the doors of my apartment.
My boyfriend stopped me. He had guessed what I would do when I got home and taken away what I had planned to use to kill myself. For the second time that night, I felt devastation and despair. I cried myself to sleep on a beanbag on the living room floor.
Somehow I made it through the next three weeks to my appointment with my new psychiatrist. I told him the story of my reaction to the two medications. He seemed on the edge of his seat. As soon as I finished, he asked me, “What do you think you have?”
I told him I was diagnosed with major depressive disorder, anxiety, and PTSD. “Or maybe,” he replied, “you have what’s called bipolar II disorder.”
“But the psychiatric nurse I saw told me it wasn’t bipolar; it was just a bad reaction to the medication,” I said.
“It was a bad reaction, but 99 percent of the time, that type of reaction only happens to people with bipolar disorder,” he explained.
I felt vindicated. I knew all along that what I was experiencing wasn’t “normal,” and it was caused by the medications. I was relieved to have a doctor believe me and not blow me off.
However, even if I did have a personality disorder, the treatment I received was appalling. Those with personality disorders aren’t attention-seeking; they are having real emotions so intense they don’t know how to handle them. Patients with personality disorders need therapy, it is true. But they also need supportive healthcare professionals who believe them, and they need to be kept safe during episodes of severe suicidal ideation, just like anyone else.
Six weeks after my second trip to the ER, the hospital sent me a survey about my experience. Here’s what I wrote.
“The case manager was disrespectful and did not listen to me or take my symptoms seriously. My then-undiagnosed bipolar disorder and serious medication reaction (hypomania) were dismissed as a personality disorder and I was told to seek therapy. My friend and I tried to explain to the case manager and the ER doctor that I was having serious adverse reactions to the medications that [the hospital] put me on, but they refused to listen. I ended up being sent home actively suicidal. Three weeks later, my new psychiatrist diagnosed me as bipolar. I am extremely disappointed that the diagnoses I was given during my inpatient stay at the hospital adversely affected my treatment.”
I don’t know if my response made any difference. I don’t know if they talked to that case manager or changed their policies, but they should. Their bias against personality disorders could have killed me.
Editor’s note: Please see a doctor before starting or stopping a medication.
If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255, the Trevor Project at 1-866-488-7386 or text “HOME” to 741-741. Head here for a list of crisis centers around the world.
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Thinkstock photo via Voyagerix