Do Mental Illness Labels Matter?
Written by Marisa Lancione
I’ve been thinking a lot about diagnoses and whether or not the label of a mental illness really matters. Within the mental health community and advocacy work, we like to separate the person from the disorder. We encourage people to say: “I have bipolar disorder,” instead of “I am bipolar.” You would never say “I’m cancer,” but you would say, “I have cancer.”
Some mental health professionals believe that diagnostic labels don’t matter as long as you’re receiving treatment that’s right for you. However, I would suggest that learning about your particular illness in conjunction with studying yourself can teach you a lot about what triggers particular episodes. So when my psychiatrist told me that I, “do not have bipolar disorder,” I felt like a piece of me had been ripped out.
It’s no secret that I have no love for psychiatrists. I have yet to meet one that I have connected with or felt like they cared about my well being. This psychiatrist is no different.
I was introduced to him the way I am normally introduced to a psychiatrist: in crisis. When I met this particular doctor, my depression was at its lowest and suicide was a serious option in my mind. My husband brought me to the emergency room and I was seen by whatever psychiatrist was on call. I left his office with a script for lithium and an appointment to see him in a month.
In preparation for my next appointment I tracked my mood over the course of the month. I created a plus or minus 7 point mood scale (i.e., -1 was a moderately low mood, -3 was suicidal, +1 was slightly happier than usual, and +3 was hypomanic). Over the course of the month, I weighed and graphed my mood, giving each day not only a number, but also noting how I slept and what I was feeling. By the end of the month when I graphed the results, the ups and downs were astonishing and irregular, even for me.
This was the graph that I made based on my 7 point scale
When the day of my appointment finally arrived, I felt proud and secure that I had done my due diligence by coming so prepared, despite the crippling depression and flighty highs. How many patients are actually willing and able to make an Excel spreadsheet and graph their mood? I wanted to prove to him, and myself, that I’m not some malingerer who wants to be sick. I want to live a full and productive life that is happy and healthy.
After waiting for over an hour for my appointment, my name was finally called. I entered his office feeling confident.
“So, how are you?” He asked, not looking up from my folder. His tone was curt.
“I’ve been better to be honest; I don’t think the lithium is working for me.”
“Why?” He demanded, still not looking at me.
“I have graphed my moods,” I said, digging in my purse. “As you can see,” I handed him the graph, “my moods are particularly unstable. This is irregular even for me.”
He glanced at the chart and pronounced: “You are not bipolar. This," [he motioned to my graph], “is not the highs and lows of someone with bipolar disorder.”
“Well, like I said, this is irregular even for me,” I attempted to explain.
“This type of mood shift is more like someone with borderline personality disorder,” he responded, tossing my graph aside.
I was stunned by how little my work meant to him and how quickly he had come to his decision. Borderline Personality Disorder (BPD) was one label that had never been thrown my way. Psychiatrists diagnosed me with depression and anxiety before they discovered I was bipolar, but never BPD.
A diagnosis with BPD is the life sentence of diagnoses. People with BPD are the most stigmatized by mental health professionals and is one of the hardest disorders to treat. I have lived the past ten years with the understanding that I have bipolar disorder. I understand the illness. I understand my mood fluctuations. I understand how my medication works. And I have just begun to identify my triggers. And now some doctor who saw me twice was telling me I wasn’t bipolar?
“Surely when I’m more stable we’ll see more regular patterns of mood shifts.”
“Lithium isn’t working for you?” He asked, leaning back in his chair and putting his hands on his head.
“No, I feel like a zombie. All I have been doing is sleeping.”
“If lithium doesn’t work. You are not bipolar.”
Now I know this isn’t the truth, but I was too stunned to say anything. I have many bipolar friends who aren’t on lithium. There are better drugs than lithium to treat bipolar disorder now, particularly bipolar disorder II. Lithium may be the oldest, but it’s not necessarily the best.
I was shocked that this doctor who had only seen me twice was telling me I wasn’t bipolar. It was like the rug being pulled out from underneath me. I left his office questioning everything I understood about myself over the past ten years. As I said earlier, some mental health professionals argue that labels don’t matter, but without knowing your illness how do you learn your triggers? I learned that with bipolar disorder sleep and stress are two common triggers. From that, I studied myself and it was true. If I were exhausted or over stressed, my moods would shift dramatically. I understand these aspects of myself because of my label. I may not be bipolar disorder, but it is an intrinsic part of me.
I have seen this psychiatrist approximately five times now and each session he asserts that I do not have bipolar disorder. He has thrown around diagnoses like BPD, obsessive compulsive personality disorder (OCPD), anxiety, depression, schizoaffective disorder, and one time he had the audacity to say that I didn’t have a mental illness at all, despite writing a script for more medication.
In the end, I still truly believe that I have bipolar disorder and in mid-September I will be having an assessment at a Bipolar Clinic, where, hopefully, my label will be established, once and for all.