Do mental illness labels matter?

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.”

Label Jars not PeopleSome mental health professionals believe that 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 you can learn 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 and -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.

moods

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, “are 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.

borderline personality disorderA 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 have 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 was 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.

bipolar disorder

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 my label will hopefully be established once and for all.

What do you think? Do labels matter? Leave your answers in the comments section.

23 thoughts on “Do mental illness labels matter?

  1. I could go on & on about your doctors & MANY other doctors for that matter,,, he was extremely dismissive & rude, down right disrespectful at you (yes I said AT you) I would be *pissed, irate, in tears, etc. The fact that he’s (& other doctors) are trained medical professional(s) in psychiatry, a specialized field of medicine treating people with mental illness (that are often questioning their psyche, sanity, selves,,,) is deplorable. He’s an IDIOT! & am asshole,,, ‘Enough said,,, He mentioned schizoeffective?? kinda contradictory, schizoeffective IS it’s own Dx, but,,, is in easiest terms symptoms/qualities of both bipolar & schizophrenia,,, what a f*¢k#r!!! BTW, I have bipolar 2 & on Lithium, Lamictal, Brintellix (SNRI) alprazolam (& prn Trazodone) because Lithium alone didn’t help, my Pdoc Rx’d Lithium/Lamictal combo because of that (I love my Pdoc) I DID have 1 “so called Pdoc” Dx borderline,,, after he saw me for maybe 10 minutes max?!?! purely WTF!!! Sorry long comment, but WORD!! I totally agree with you Chicka!!

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  2. I hate your psych, but we’ve already established this. The way he shrugged you off only shows that he should probably consider early retirement as a course of action.

    A few months ago I took my dear friend to ER in a crisis state, after ten minutes the psych on call also diagnosed her with BPD, WTF? Any psych worth their salt will do everything they can to diagnose the appropriate way, by using a history, not one “episode”

    Yes, I believe that labels matter, although I prefer to call them names for illness. When we find the correct diagnosis it is easier to be treated. As for the twatwaffle that says you aren’t bipolar because lithium doesn’t work, he can suck it. Meds effect everyone differently.

    Love and light, and good for you for being proactive. Sadly, as you have just proved, when we are not proactive in our care this shit happens. I’m happy that you are fierce and refuse to take this dimwit’s ‘expert opinion’

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  3. Man, it does my head in how little some psychs actually know about the bipolar spectrum. The first guy I saw here told me there was nothing wrong at me at all besides an anxious personality (!!!!!!!!!), and when I tried again a year later to get looked at, I got him AGAIN and he gave me the BPD label too. Thankfully, his boss isn’t a fucking moron and knows about Bipolar II, and that many people with Bipolar II rapid cycle, even ultradian rapid cycle, and that they don’t have a personality disorder. But before I saw that first guy, the initial diagnosis team had said bipolar, so like. Blergh. I’m glad to have my label, because it helps me understand how I work and how to make me work better.

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  4. I don’t know if it’s viable for you to change doctors, but someone like him does no good for your medical record. His notes will get handed down to others later and sadly lots of professionals will be inclined to believe whatever the person before them said.

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  5. I wouldn’t like this Dr. either.

    I definitely have bipolar, and while my mood swings usually aren’t like the ones you charted, when I’m really stressed they sometimes do swing like that. The people I know with borderline don’t cycle like you did, they have moods swings that change by the hour, sometimes by the minute.

    I once had a Dr. tell me that I didn’t have bipolar because I wasn’t cycling for the month he saw me. Sort of the opposite of what your Dr. did. Well, I was taking meds for years at that point, and I was (and still do) having long periods of euthymia between cycles.

    I hope the bipolar clinic people have more of a clue.

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  6. what matters (for me) is the label I know to be true. I have MPD (multiple personality disorder) which is now DID (disassociate identity disorder) along with depression & a whole bunch more. but I say: I live with multiplicity – not liking the ‘disorder’ part. & we had a very similar situation last year when during the first visit, the psych doctor told me within 10 minutes that I did not have DID – I never went back. having lived with multiplicity for my entire life (I am 59) I know what is true for me & my own label helps me know how to take care of myself, know my triggers, meds that work etc. always trust yourself if possible – this has worked for me…
    & I love your blog – thanks so much for sharing…

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  7. Fire your psychiatrist. (P.S. Grammatically speaking, you don’t say “I am cancer” because cancer is a noun. Bipolar is an adjective, which fits better in that reflexive pattern. To me it’s a non-issue.)

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  8. Reblogged this on CoffeeTattoos and commented:
    Sometimes I wonder about the mental abilities of some psychiatrists when I read things like this. When you’ve had a diagnosis for 10 years, like Marisa has, it’s incredibly hard to believe someone who barely knows you saying that you have a different diagnosis.

    I send lots of love and strength, and maybe some patience too, to people who have encountered this kind of situation.

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  9. What you’ve experienced is outrageous. Unfortunately, quite common too. I’ve only had a couple of decent psychiatrists in the past 15 years; the majority are incompetent or disillusioned and really don’t like their jobs.

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  10. I feel like I’ve landed on a gold mine by finding your blog. I too am bipolar. I don’t say I have bipolar because ultimately my actions are often controlled by my disorder. And like you, if someone told me I wasn’t bipolar, I wouldn’t know how to reconfigure myself. However, I have been diagnosed as having BPD. And although my psychiatrist doesn’t discount my bipolar, he has said that there is no treatment for BPD. He feels it’s something people “outgrow” (I’m 46) and if I haven’t by now, it’s because I have no self-control. You know yourself, Excel sheet and all (that was very impressive I must say!) and if the doc is continuing to prescribe medication, then be grateful for small favours, and can you find a different doc? I know, easier said than done, right? I will be following your blog closely. I subscribed.

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    • I totally disagree with the Dr. who says there is no treatment for borderline. My current and ex wife both have borderline. It’s part of why I’m divorced from the first wife, but it’s not a problem with my second wife, thanks to her wanting to be rid of the symptoms of borderline and working very hard with DBT skills (Dialectical Behavior Therapy) The creator of DBT, Marsha Linehan has borderline herself and created the therapy to help others. It’s helped me with my bipolar and OCD and anxiety as well BTW.

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  11. Unbelievable !!! Well it’s not really in my experience. Psychiatrists in general to not look at the whole person. If you question and argue them then you don’t fit into a certain box.
    The person in question sounds an idiot but what would I know . I am but a mere bi-polar suffer.
    Hope all works out for you.

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  12. I was recently hospitalized for a low mood episode/overdose. The psychiatrist told me he thought my impulsivity was more borderline personality disorder than bipolar disorder. My response: Sir, a personality disorder is a constant part of your personality. It means it’s always there. It’s always been there. Treatment requires a change in personality. Bipolar disorder? That’s a mood disorder. It requires a change in mood. Mood management. You want to say I have borderline disorder? Think what you want, but I know I have a mood disorder. The disorder I have is with my moods and is not part of my personality.

    I say all that to say – psychiatrists seem to always want to diagnose women with borderline. There is NOTHING wrong with having borderline at all (there should be no judgment, no stigma), but those of us with a mood disorder — we know what our correct diagnosis is.

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  13. I’m 65 and have had many labels thrown at me over the years. Caring psychologists do not reference some unchanging diagnosis. They concentrate on the individual for the therapy. As for psychiatrists, they cannot see inside the head to see what chemicals do what. We all have different chemistries. Labels give a reference point to get an idea as to where to start with the chemicals. It’s guinea pig time. For 15 years, I had everything in the book given to me, including lithium. The diagnosis that fits me best, from my own research, is ultradian rapid cycle. I take nothing for it now. I have come to realize that drugs do not make anyone “normal”, they just make a person fit in better, often at times at the expense of never feeling good at all. Scientists are starting to get that some brain chemistries are just different and when adjusted by way of drugs, the patient doesn’t feel normal to him/her self. The biggest problems I had were that the nuances of my “difference” made me incompatible to what people expected from me. My emotions were given to me internally by way of my own chemistry rather than the way “normal” people get theirs which is in conjunction to external stimuli. I could dance at funerals and cry at parties; whatever my chemistry was doing. I am retired now and somewhat reclusive. hell, I never felt like I fit anyway so I do not feel like I am missing anything. I am not a sad story as I know my life was never meant to be “socially oriented” with the acceptance that I am “different” and will always be. For those of you labeled and having needs to “fit in”, whether it be workplace or social, try to conserve your energies when aimed at “getting through” having to deal with people who will never understand you, and save those energies for a mode of life either alone or with a few understanding people who will not judge you with their expectations. I have friends who enjoy me when I am in the right chemistry, not too manic or depressed, and they understand when I have to disconnect when I am in either extreme emotional state. I was blue collar for my career and things don’t care what mood you’re in when you work on them. That is how I got through life with people. The psych doctors will never be able to “fix” anyone, they can only adjust your chemistry enough to allow you to get through social arenas. They cure nothing and relate to nothing for the most part. Most shrinks have never felt what it is like to be “bipolar” or any other mental label. They have no real point of assessment as to what you are going through other than what they have read in books and other journals written by other doctors. In the case of a shrink insisting upon a label, I would run away from that quack as fast as I could. Find a good psychologist that you can relate to, and they can help you with your chemical therapies given by the psychiatrist by actually knowing who you are. Most psychiatrists could not give a damn as to who you are as an individual, they just want to play chemistry. And with what little time the insurance companies allow them to spend with you, they cannot do that well either; in my opinion.

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