Misdiagnosis, fear, the journey towards recovery

from the Mayo Clinic
from the Mayo Clinic

The San Jose Mercury News has a fantastic news feature out- “Misdiagnosed Bipolar: One girl’s struggle through psych wards before Stanford doctors make bold diagnosis and treatment.” It relays the experience of a middle-schooler (Tessa) who developed a series of violent and bizarre symptoms- not over a long period of time like many mental disorders, but within a couple of days. Several successive psychiatrists diagnosed Tessa as bipolar, although two Stanford doctors (Jennifer Frankovich and Kiki Chang) believed her symptoms matched a new and poorly-understood condition- Pediatric Acute-onset Neuropsychiatric Syndrome (PANS). Her brain wasn’t out of balance- it was under attack from its own immune system.

Misdiagnosis is all too common. In juveniles there is an ongoing war between psych professionals as to what bipolar disorder even is in that context. For the DSM-V standards, a controversial new disorder, Disruptive Mood Dysregulation Disorder (PDF), has been added. It will help better explain the huge spike in children diagnosed as bipolar, but don’t meet all the criteria. Or maybe DMDD doesn’t exist. Depends on who you ask.

A fear I have had is that when I switch to a new psychiatrist, they won’t understand my unique case and diagnosis. My current psychiatrist has a decade of data on my mood, symptoms, and reaction to medication- but that doesn’t all carry over to another person. That’s why I went to the Stanford Bipolar Disorders Clinic some time ago, and got a full intake with one of their experts. In short, that person agreed completely- I fit the criteria for bipolar II disorder, my mood swings are seasonal and rarely linked to stress or other aggravating factors. Together, there is a solid dossier of important information of who I am, and what the last nine years have been like for me.

A major issue some with bipolar symptoms have when they walk into a clinic and meet a doctor they’ve never seen before. Unless they’re actively in a manic or hypomanic episode, they may be diagnosed with major depression, and be given anti-depressants. This is a numbers game- more people have depression than bipolar. Looking at official numbers, it’s about 3:1 if you include chronic minor depression. However, anti-depressants are the worst thing one could prescribe for a bipolar. I have personal experience on this issue.

In 2012 I had a long period of chronic fatigue and depression- it was decided that a jolt of antidepressants for a short period could help break that.

And it did! Oh boy it did.

The situation was more complicated, however. Part of the reason I was so tired was that I had some untreated infection that eventually cleared. My body was getting more active and energetic on its own. The medication just shot my mood into the stratosphere. It wasn’t a typical manic episode (as type II I shouldn’t get those), but it was more intense than any episode before. This was my last major crisis; chain of medication aggravating the situation.

It’s terrifying to develop strange symptoms suddenly. Anyone who has had it happen in their family or among their friends knows the sense of anxiety and fear. That’s the nature of mental illness; it can happen to anyone, and each case is unique. Medication that works well for most may be worthless. Rare side-effects can crop up, even for people who had never had adverse reactions to medication before.

As with PANS, there may be other considerations that we don’t even know at this point. It’s 2014, science has made gigantic steps in the past decade, let alone the past century. Yet many neurologists think PANS is bullshit, and research on it is in its infancy. If Jennifer Frankovich and Kiki Chang are correct, then many families may get their children, wives, husbands, siblings back from the darkness. Still others are waiting for a diagnosis and a treatment.

 

Holding your two selves together

BipolarColor
Image by Andrew Mackay.

Growing up, I was diagnosed with anxiety at an early age. From age seven onward therapy was a regular aspect of my life- it was just another after school activity. Some kids went off to learn viola, I went to a biofeedback room to learn how I could control the fear and unease that ruled my life.

That was the diagnosis up until just before I turned fifteen- anxiety. General anxiety, social anxiety, separation anxiety. It was something, a vague combination of all the ways one can feel out of place and time. There were constants. To this day I hate calling people on the phone, which dates as far back as I can remember. But it was in flux. Maybe some of this was obsessive-compulsive disorder (a psychiatrist theory). Or just a weird adolescence. Perhaps I suffered the same fate as many ‘gifted’ children- a dysfunction around others, even those I had a lot in common with.

The lay of the land changed when the moods formed a pattern and my problems found a name. Ever since, life has been about reconciling old issues with newer ones. What is anxiety to me? Where does it fit now? Is it fully independent of bipolar, its own sovereign disorder- or perhaps that they feed each other in a cycle much like the steady sin wave that governs my mood swings and struggles with the extremes of bipolar disorder.

Anxiety, as it stands shortly before I turn twenty-four, is a symptom. A special sort of symptom, fed by hypomania followed by depression. It is the metaphorical headache that comes with reconciling two wildly different, but very real persons. After engaging in stupid or dangerous things while manic, my depressive self must deal with the social ostracism and humiliation. I’ve heard classmates and friends telling me they prefer the funny, hypersocial me- the same one I fear and hope never reappears. Each cycle one self creates commitments, strange friendships, debts monetary and not- then the other self must sift through them. A constant reminder of behavior that is both at times shameful and bizarre. Why did my depressive self let all this crap pile up? Why did my hypomanic self blow all that money?

To me, bipolar disorder is not just the two selves with little in common. It’s the attempt to be sinew, and connect the various fractions into a coherent self. It’s difficult and demanding- and gives me great anxiety. But anxiety is not a standalone issue- it is the water gushing from the crack on the dam. You can buy all the buckets you can find, and gather the water to keep it from flooding what lies below- but the water will never stop. The crack needs to be fixed. Thoreau spoke that “There are a thousand hacking at the branches of evil to one who is striking at the root”. Day-to-day maintenance is so overwhelming that in the past I could rarely ponder “why am I anxious?”

This present period of stability is incredible. It far surpasses the most raucous fun of hypomania, and it is the most treasured possession I have. It has allowed me to understand symptoms from a new perspective- the major cause is being controlled, so what still bothers me?

And anxiety is still there. I don’t like calling even close friends on the phone, or knocking on a stranger’s door. The anxiety is less widespread and reminds me more of my pre-bipolar past, talking with a soft-spoken psychologist and trying to control my breathing and body temperature with biofeedback. This is what remains, once the anxiety of reconciliation is kept to a dull roar. Like the tremor in my right hand from lithium, it’s okay that it exists. I can handle it. I’m okay.