The Diagnostic Discrepancy

If you’re an American who has been diagnosed with a mental disorder, chances are you are familiar with something called the DSM-IV-TR. The Diagnostic and Statistical Manual of Mental Disorders, currently in revision with the release of version 5 expected to take place in May of 2013, contains the standard diagnostic guidelines for all current mental disorders in the USA.

What you may not be aware of is that the majority of the rest of western civilization uses another set of guidelines. The International Statistical Classification of Diseases and Related Health Problems or ICD for short, contains a chapter (V) which is used primarily for diagnosing mental disorders. This information is apparently also currently being revised by the World Health Organization with a scheduled release of 2015.

The information in these two manuals is not identical.

This is just one of a few facts I learned at the Bipolar Disorder in Focus conference last week.

So, clearly there is a problem here. There isn’t a clear understanding of what bipolar disorder is across the board, and the criteria for having the diagnosis is different depending on where you live.

There has been such a large discrepancy in the information between the two manuals that, from what I’ve been told, up until 1980 if you were diagnosed in the USA with bipolar disorder, the same criteria would mean a diagnosis of schizophrenia in Europe.

That is obviously an extreme example, but there are still many discrepancies today.

I had no idea that this was an issue, but I have witnessed that the understanding many medical professionals have of bipolar disorder varies widely. It seems to me that defining the disorder in a way that everyone can agree on would be a really good place to start.

That may sound simple, but I realize there are many things standing in the way of that goal as well.

  • “Bipolar Disorder” covers a wide range of symptoms, and many different groupings of these symptoms. There are so many individual versions of this disorder that it would be impossible to create enough “types” to cover them all. The challenge I am currently facing is that what I experience doesn’t fall easily into any of those established categories, or at least not to my knowledge. I’ve been told that is increasingly common, but it makes it even more difficult to find a doctor who knows enough about the disorder that they can work with me. Likewise, when defining this sort of disorder, where do you draw the line? At what point do you fail to include those with similar symptoms?
  • The symptoms associated with bipolar disorder can be difficult to quantify. How many of you have been asked by doctors to remember situations or episodes that are hazy and hard to pinpoint? How many have related your symptoms to a doctor in a way that was skewed, either because of your current state or failure to comply (lying)? Even when charting my moods each hour I can have a difficult time discerning what I’m feeling or how long a feeling lasts.
  • With the research that is being done around the globe, there is no possible way to have everyone on the same page. Since our knowledge of this disorder is constantly evolving, we can’t have a static understanding. Yes, both manuals are being updated currently, but how long will they reflect our understanding now when “now” becomes the past? How many years will what is written be the norm, even after we’ve learned much, much more?

So we’ve established that it is impossible for all doctors to mean the same thing when they say, “bipolar disorder,” because of the simple fact of the lack of clear definition across the board on its own.

BUT on top of that, each doctor will have a varied amount of knowledge on the subject. Each will have biases, based on the patients they’ve seen or the people they’ve worked with. Each also has a different set of tools they use in regard to assessment, like which aspects of a patient’s history they look into. Family history, substance abuse, social history, screening tools (like quizzes), each doctor goes about seeking that final answer of a diagnosis in a different way.

The biggest frustration I’ve had, is that there is not only a huge discrepancy in knowledge between doctors, but also that there is a big discrepancy in knowledge between patients and doctors.

We’ll take the example of Dr. Mustafa from the conference. He has a more broad and substantial understanding of bipolar disorder than any doctor I’ve ever met. However, his understanding is entirely conceptual. He has the overview and knows which symptoms attribute the disorder, but there is obviously a distance between his own mind and the concept.

As a patient, my understanding of bipolar disorder is inherent, I only really understand the portions I have experienced. Even then, since they are part of my experience it can be hard to separate these symptoms from myself. It is confusing, I don’t know which elements to refer to as symptoms and I look at my experiences on an episode-by-episode basis. I rarely see what is going on, via some kind of overview.

I can appreciate and understand that this is why I need this kind of doctor. He sees the situation in a way that I can’t. At the same time, when I see these doctors I don’t know where they are coming from. I don’t know how much knowledge they have, or what their experiences are, or what their intentions are.

If I knew what they knew, I could better communicate. I could use the language they use, and save myself the trouble of wading around my brain in rubber boots looking for parts that either are or are not there.

One of the biggest things I felt at the conference last week was that there is a huge disconnect between what doctors know and what patients know. I realize that doctors go through medical school and everything, but I don’t think that is exactly what I mean.

Doctors know the big picture. What illnesses look like overall, and what can happen to them if they go untreated.

Most patients are much more familiar with the more intimate details of an illness, and are often blocked by looking at the past too much or the future too much because of what is going on immediately.

Maybe I just haven’t found the right doctor, but it seems like there should be a way to meet in the middle. It isn’t that I want the knowledge to self-diagnose, I just want to understand the medical process better, and utilize it better.

How can we rely on diagnoses when they are interpreted differently by each doctor we meet? That seems ridiculous. If our doctors can’t have a more standardized understanding, can we at least teach them to communicate better with patients? Or teach patients to communicate better with doctors?

Or both?

11 responses to “The Diagnostic Discrepancy

  1. My family decided that they thought I have borderline personality disorder Rather than bipolar disorder. I discussed this thoroughly with my therapist and psychiatrist. My therapist said I wasn’t and give a long explanation of what he thought the disease was. My psychiatrist just laughed and said there was no such thing. I bet this is the case for bipolar disorder too many different definitions With no consistent agreement. Sucks for us!

  2. Very interesting. I have been told that without controlling the symptoms of Bipolar 1, the mania would come more often and could lead to Schizophrenia. I wonder now if there is truth in that

  3. There is a fine line but doing research on your own conditions, helps immensely in identifying symptoms you were never aware of and wouldn’t have known to tell your doctor about. This is especially true with Disordors and Syndromes that has so many different symptoms and conditions associated with them.

    Better DNA identification will help but that can also backfire, as is the case with Marfan’s, where Each family has their own unique mutation of the faulty gene, making the tests highly unreliable and could lead to death due to the patient ignoring the warning signs.

    That is also why I am liking WP more and more each day. We can learn from each others experiences and learn new ways of coping with the BP monster…

    And David, been there… I was initially diagnosed as “Possibly Border Line Personality”…urm…yeah… I’ll let that doctor know the next time I have a “identity crisis”…untill then, she’s not seeing a penny from me.

  4. There are standardized assessments. But, these are really unreliable inventories. I’ve had a doctor argue with me that I didn’t qualify for hypomanic symptoms because I’m not reckless with money. I argued back, “How can I possibly spend with wild abandon when I’ve never had any money to spend?!” He retorted, “That’s not the point.” That is the point! When I have money, it does go down the drain. I eat out, I buy things I don’t really need. But, when there is no money, there is no money. I can’t spend.

    I have only been known to be promiscuous on three occasions. It doesn’t mean that I’ve never been hypersexual. And the doctor argued with me on that point. “Why would I need to cheat on my significant other when sex is available all of the time?!” Again, that wasn’t the point.

    Reckless behavior. I reported that I would go on binges. Alcohol, pills, whatever. Wild abandon. Missing work because I was too messed up to go. Skipping school because I had better things to do. Quitting jobs because I was finally angry enough to walk out that door, but I had no backup plan. “Everyone does those kinds of things. They’re not out of the normal kind of reckless.”

    I swear, this doctor just didn’t want to diagnose bipolar disorder. He eventually caved when I told him that I was treated for MDD for five years and gave up. The medication would work great and it seemed like miraculous recovery! And then I’d crash back into the worst of depressions. Oops, drug induced hypomania gives it away, especially after three antidepressants had the same effect.

    I’ve reported all kind of strange occurrences to doctors where I’ve been told it was perfectly “normal”. Extremely delusional points in time, depressive and hypomanic. Internal dialogues and The Voice, classified as normal, because it’s not classified as an “auditory hallucination”. Sensory disturbances. It’s like something cranked the volume up, or my vision goes high contrast. I’ll see shadows moving around or lights that don’t belong. One doctor asked if there was any epilepsy in my family. No, there isn’t.

    With high co-morbidity, I can see why doctors have difficulty establishing a standard. What is typical of BP alone?

    • I am more terrified than excited by the idea that genetic testing may become available for bipolar disorder, as these scientists have said themselves that the genetic marker is present before any symptoms are. I understand the preventative aspect of what they’re doing, but would I want to be heavily medicated for something that I have no symptoms for yet?

      Not when the medications are so often heavily sedating and cognitively clouding.

      Think people have trouble staying on their medication now? Think again.

      • That can be a difficult one… People don’t like to be “labeled”, not even when they are presenting with symptoms, let alone none at all…

        Your quite right on that one…

    • Weird…are you sure your not possibly my “Doppelgänger”? I need to write a post on my Palinopsia for you 😉

  5. This is a pretty timely topic for me (I just posted on it, too). When I see my psyc on Monday I am going to ask her which code she used from the ICD, although the team I am dealing with is very well versed in the DSM also.

    I wish everyone could just get on one page and stay there.

    Haven’t heard and scuttlebutt about how the ICD revision in going, but the DSM-V seems to be a nightmare.

    • Yeah, I’ve been hearing all sorts of things about how the revision of the DSM has been becoming more of a political debate than a scientific one. Great, just what we need, right? I wouldn’t be surprised if we wind up with the DSM-V being a carbon copy of the DSM-IV at this point, but I sure would be disappointed.

  6. Pingback: The B.C. Blog Answering Machine | bi[polar] curious

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