Prejudice, Not Stigma: How People with Mental Illness Get Crap Health Care

Eight years ago I published an article titled Doctors' Prejudice Against Mental Illness. It lays out the reasons why it is so damn hard for doctors to learn. Here is a paragraph from that original rant:

Similarly, people with other mental illnesses as well often do not receive routine standard of care for a whole host of conditions, including screens for infections, dental care, metabolic syndrome, even blood pressure checks, even while receiving medications that put them at risk for all of these health complications. As a consequence, the death rate gap between people with mental illness and the rest of the population is growing.

The link in the second paragraph is to a World Psychology article, a review of the literature documenting the crap health care that people with serious mental illness receive, with the consequence that we die an average of ten years sooner than people without mental illness.

The difference in lifespan is only slightly due to suicide. For the most part we die of the same things everybody else dies of, heart disease, cancer, that sort of thing. We just die sooner because our heart disease and cancers are not detected as early, nor treated as aggressively, as everybody else's.

Statistics are sterile things. People with severe mental illness in the US have the same lifespan as people in Somalia. Well, I don't know people in Somalia and I'm not dead yet, right? So what does that mean?

How about one person to make it real? How about one story to explain how doctors' prejudice works and what the consequences are?

Here is my story.

A month ago, after a few years of telling my therapist, I think they're missing something, I had had it. I called the doctor's office and said, I have a lump in my vagina. Nobody has ever looked at the damn thing, and I don't believe anymore that it is a hemorrhoid, (which is what the diagnosis was.)

The scheduler took lump in vagina seriously, and I got an appointment that afternoon. They finally looked at the damn thing.

Who told you that was a hemorrhoid? Actually, I had referred to it as such originally, because I do have a hemorrhoid, and because I am not the damn doctor!

She didn't look at it?

I described the symptoms I had reported, that it was pushing into my vagina.

Hemorrhoids don't do that. She didn't look at it?

The new doctor and the student who was shadowing him were so nonplussed, I began to doubt my own memory of the appointment two and a half years ago.

So I went home and looked up the case notes in my chart.

Sure enough, the provider had faithfully recorded what I had told her. Sure enough, what I had told her clearly indicated the diagnosis I finally received, a prolapsed bladder.

Only back then, it would have been grade one, the least serious. (I also Googled prolapsed bladder, with which I was not familiar because I am not the damn doctor!

But today, I have a grade three prolapse. My bladder is hanging outside my body. Plus, now there's a bulge on the other side of the vagina wall. The nonsurgical intervention is off the table. The required surgery is now more complicated.

Just like how people with schizophrenia whose cancers are not diagnosed until the most serious stage four, my prolapse was not diagnosed until the most serious grade three.

She didn't look at it?

Ah, but the chart told the rest of the story and contained the explanation. While I had requested a full physical to discuss this discomfort in my nether regions, the nurse who did the Medicare wellness check a few days earlier had alerted the provider about my depressive episode. They and the social worker had a consultation and decided, We are concerned that we are not doing enough to help you with your bipolar.

I would hear that exact line from two different people on that day when she didn't look at the damn thing. They had considered carefully how to work around my presumed stigma about seeing a psychiatrist. (Why would I be reluctant to see a fifth psychiatrist? Except for her lack of qualifications in bipolar, that is...)

Actually, both the provider and the social worker seemed pretty nervous. How were they expecting this insufficiently medicated bipolar to behave? In anticipation of the conversation, I can imagine that the provider's HPA axis was in high gear and interfering with her diagnostic capabilities.

Now, the wellness check had run long, because nobody had recorded the extensive family and psych history I had provided ahead of time. The nurse was inputting a lot of data, and reduced it to highlights that will be of no help if I am ever hospitalized. She didn't really have a full picture of how much time I spent with a nationally esteemed expert on bipolar. She hadn't ever heard of him--because she doesn't treat bipolar; she does Medicare wellness checks.

Nor did she have a full understanding of the range of treatments that this bipolar expert and I had already tried, and my full compliance with his recommendations, and, following his recommendations, my relative stability for the past few years, with a recent blip of a depressive episode, for which I had a treatment plan.

Nope, a nurse, a nurse practitioner, and a social worker decided they weren't doing enough to help me with my bipolar.

Translation:

Red alert! Bipolar not taking antipsychotics in aisle three!

via GIPHY

So the provider didn't have time to look at the damn thing. She had to get me to agree to talk with the social worker whose assignment was to convince me to try the practice's consulting psychiatrist, a generalist (I use the term cookie-cutter psychiatrist) fresh out of residency.

The upshot of the cookie-cutter psychiatrist's chart review was a recommendation for a medication I indeed had not tried, a medication that the expert, another also much more experienced psychiatrist, and a better family practitioner had all specifically told me not to take. Plus some other stuff that is not best practice.

The other upshot was that I spent a few weeks traumatized and frantic about the quality of care I was likely to get if I ever did have a psychiatric emergency. The expert has retired, and I still don't have a replacement, because I am not willing to put my life in the hands of people who have read less research about bipolar than I have.

But anyway, I have bipolar disorder. Whatever is wrong with me must be related to that. So nobody needs to look at anything.

via GIPHY

Since that diagnostic fiasco from two years and a half years ago, I have frequently complained of fatigue. No luck getting that dealt with either. In fact, reviewing my case notes, now knowing why this thing is hanging out of my body, I wonder whether along the way I have had a few UTIs, also not diagnosed, because I said fatigue instead of lethargy. Because I am not the damn doctor!

And fatigue, clearly, is a symptom of depression...

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...for which I had already refused their efforts to help me when they wanted to prescribe medications that I knew would make the course of my bipolar worse.

That is the mechanism, the process that delivers crap health care to people with mental illness. That is how we die on average ten years sooner than the rest of you.

Look on the bright side, Goodfellow. It's just a bladder handing outside your body. It's not stage four cancer. 

This time.

via GIPHY

Yeah, well, Dame Maggie, I guess I'm feeling like my bladder, kind of low about the whole thing.

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