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30 Jul 2016

Where Do We Get Our Mental Health Stories Anyway?    

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When asking where our stories or “narratives” mental health come from, the most obvious answer is simply:  Our lives, duh!

Most commonly, someone’s story of mental health is understood as simply a descriptive account arising from and reflecting upon a series of objective life events. For instance, someone might say: ‘I first noticed the symptoms when I was young…I finally received a diagnosis last year…I’ve felt like a new person since being on treatment…..it’s still very hard’ and so forth.

These life events are seen and presented as basically speaking for themselves, with the narrator of the story merely reporting on the objective life events as their primary eye-witness. To hear the report, then, is to hear the narrative or story.

Less commonly, however, one’s story or “narrative” mental health is understood to be something far more profound than a merely descriptive account arising from objective events. It is, instead, the particular interpretive framework an individual embraces, adopts, hones and refines moment by moment as they navigate the evolving complexities of mental health conditions.

From this vantage point, every moment of human life (with or without mental health challenges) is associated with a particular interpretation or narrative – from a moment of suffering, to another of clarity, to an interaction with a medical professional, to the experience of ingesting a particular medication. Rather than speaking for themselves, each of these moments must be ‘made sense of’ by a human being who is himself/herself fundamentally a self-interpreting creature.

Have I lost you yet?  I feel like a Grandmother talking about her lovely grand-babies when discussing narratives…even a decade after completing my dissertation work on the subject.

Outside of that thick tome in the Champaign-Urbana library, I’ve never published anything more about what I learned.

Till now! (are you still there?!) (: 

One of my primary questions was how does a particular narrative of depression arise in the first place:  where does someone come upon a particular ‘story’ of what depression is or what to do about it – this,  in comparison to another completely different story?

In five bite sized pieces, let me crystallize what I’ve learned about the “adoption” of mental health narratives:

1. None of us create our narratives ‘whole cloth’ or out of thin air. Each and every one of us craft our personal narratives of life drawing in different ways from surrounding community or cultural narratives that compete for our attention. Depending on all sorts of factors, influential conversations and various life events, at some point we adopt or ‘download’ certain fragments or parts of a narrative – or on occasion, an entire narrative. How exactly this happens in the case of depression was the subject of my narrative interviewing study.

My analysis of fifteen in-depth interviews delved into not only what people told me – but how they told me (what they told me). This included how they highlighted certain elements of their story, where they placed emphasis, which interpretations arose in different moments, how they responded to contrasting or confirmatory views from others, etc. Needless to say, both the process of arriving at a particular story, and the actual narrative that ends up getting ‘downloaded’ are extremely nuanced, complex and juicy inquiries.      

2. The brutal pain of depression itself provides an urgent starting point for the narrative task of ‘making sense’ of suffering. Almost always, a key backdrop for the narrative sense-making was the excruciating pain of depression itself and various ways people were grappling to make sense of that. Describing her experience with depression, one woman compared it to previous agonizing abuse as a child:

“I have had…beatings to the point of unconsciousness – ripped, broken, arms taken out of the socket and that compares nothing…doesn’t even begin to be the pain that became every day, just right here (pointing to her chest) – this thing that wouldn’t come off – that made it hard to breathe…like, I would rather have every day, just hours and hours of people beating the shit out of me than to [have] been where I was just inside. It hurt that bad…there were times I thought it would kill me – all on its own.”

Naturally, this pain almost demands an explanation – what the freak is happening? It seemed clear that confusion about what was happening only added to people’s pain:  

“The thing that made it so frightening (pause) and so…difficult to handle was that I couldn‘t find where it came from. It seemed to come out of nowhere. I would wake up feeling sad or wake up feeling angry and I couldn’t figure out why. How can you be sad when you wake up? Nothing caused you to be sad!”

No wonder, then, that individuals and families felt great urgency to find some kind of explanation. After starting to experience suicidal thoughts, one man described his family’s reaction: “my mom decided, she‘s like, “We have got to do something about this. We‘ve got to. And it‘s just..it‘s hanging on too long, and you‘re just, you‘re gonna..you‘re having trouble with this. And we just, we just have to do something.”

3. Powerful ‘galvanizing’ moments with key individuals shape people’s understanding of their experience. Reflecting on this desperate moment of pain and confusion, individuals described a uniquely intense relief upon discovering any way of making sense of their pain. Often the process of coming to an answer starts with a friend or family member offering to help them.

“I had a very dear girlfriend that lived up the street that saw the warning signs in me. And Emily came to me and explained her story of depression which started for her when she
was a teenager. . . She said, ‘let me help you. I really feel like you are exhibiting the symptoms that I suffer…I‘ve been down this road; let me help you’…And Emily [said] to me, ‘Sarah, it‘s the lack of serotonin in your brain’ and I go ‘serotonin what in the heck [is that]?’ And so she described it in a really simple way that our brain has neurons…”

 Almost always, the next step in the narrative formation includes an interaction with a medical professional. These conversations also typically culminate in a diagnosis that is often experienced and described as a transformative moment: “‘God, thank you!’..you know, ‘I‘m not insane—this is a real thing. It‘s in a book somewhere..we can start working on it.’ There was a relief that I wasn‘t alone, totally, anymore. And…it didn‘t feel so stuck anymore.”

Accompanying this problem definition, of course, is a solution definition centered on a pharmaceutical remedy. For many, the taking of medication itself becomes a second galvanizing moment:  “You know, the magic part of my life was taking that Prozac. It just seemed to do everything. I had the energy, I was losing weight I could stay up (laughs) until 3 a.m. cleaning and everything was organized and it was just wonderful. It was like the superwoman I wanted to be.”

4. For others, especially over time, great reluctance and hesitancy also arises. Not everyone experiences these moments of diagnosis and treatment as redemptive. The same woman who described feeling relieved with diagnosis admitted to some conflicting emotions:

“On the other hand, it was so defeating, you know, ‘it‘s not going away–this is me’, you know—and that‘s sad. You feel like you lose yourself, almost. Like a part of you dies when you‘re diagnosed…It‘s almost like a grieving period realizing that the person that was faking it for so long–she wasn’t real. And she kind of did die and that we had to reinvent and restructure this new being, almost. That we didn’t have any information on what would make it better…it was almost like we were constructing a new being, you know? Giving her the tools and the revenues, making sure she had insurance all the time, you know? I mean, it‘s hard….[you] do feel a detachment from everything you thought you were when this becomes where you‘re at, because this is not who I was supposed to be.”

It’s also common for individuals to experience reluctance and hesitation about medication, especially as they navigate its complexities over time.  Moments when the initial effects of medication wear off and dosages are increased or other medications added were especially challenging to navigate.

Even so, the power of the early galvanizing moments often remain many years later. Reflecting on the early boost from Prozac, one woman spoke fifteen years later about her earnest hope to find the drug or dosage level that could return her to that state. 

For others who had experienced especially challenging side effects, they described fantasizing about life without medication. Some admitted fearing who they would be without it: “I‘d really like to be off the meds, but the person off the meds is scary” one woman said – expressing terror that she would be “locked up in the attic somewhere, or indisposed all the time” without them.

In these moments of doubt and confusion, several described the confirming voice of friends and doctors as being especially influential [1]

5. Interpreting emotional states with changing medical effects is especially complex. It became especially clear how tricky and complex the task of ‘making sense’ one’s experience becomes when states of mind and body change so rapidly with evolving treatment effects. When a painful emotional state happens concurrent with medical treatment, for instance, it isn’t always clear what to make of that. (Almost always, the painful emotional state is attributed to the underlying disease condition).

Likewise, when a positive emotional state happens concurrent with medical treatment, the same dilemma arises: where is this coming from? (Almost always, the pleasant emotional states is attributed to the medications themselves).

The experience of tapering off medication raises especially complex questions, especially in terms of “narrating” the physical sensations that arise in the process (Is this a return of depression and evidence that I need the meds – or predictable withdrawal effects that will pass in time?)

And that’s that!  Five main take-aways from my study of depression narratives. Maybe you can at least see why we’re fascinated by this stuff at All of Life!!

[For those with interest in reading more, the entire dissertation report can be downloaded here – Investigating The Adoption, Constitution And Maintenance Of Distinct Interpretations Associated With Depression And Its Medical Treatment]

 

Notes: 

[1] A whole set of language patterns also arose in interviews that seemed to help affirm and maintain a particular narrative of mental health over time as well. These include:

  • Accepting monitoring: “Have you taken your medication today?”
  • Affirming the evidence: “It was great for me to have a picture of my brain”
  • Reframing the past: “I was a little naïve back then”
  • Looking to help others: “I think he probably has some kind of disorder”
  • Persisting in treatment: “I’m a firm believer in medication”
  • Reconciling difficulties concurrent with treatment: “You just have to deal with it, you know?”
  • Narrating life without medication: “What happens if I stop taking these?”
  • Defending one’s narrative: “They just don’t get it!”

 

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