The relapse mystery and how to live with it

Priyanka Bajaria, a psychotherapist with lived experience of mental health challenges, describes a relapse of her condition as "a betrayal by the very tools and insights I’ve worked so hard to gather. It’s disorienting because I know better yet can’t do better in that moment."

The shame is often compounded by familiarity – "I’ve been here before, and I promised myself I wouldn’t return." Recovery after a relapse tends to feel much heavier, Bajaria adds. "Not just because of the symptoms, but because of the added weight of self-doubt. Each episode makes me renegotiate hope."

For Livanya K, a relapse holds two equal and opposite pulls. "One, it sadly strengthens or sets it in stone a little deeper that I have to live with my mental illness. And two, there is the slightest of hope, each time, that maybe next time I will be better equipped to deal with it."

There's little we know definitively about mental illnesses. But this much we do know: A relapse is usually not too far away.

According to one paper led by British researchers, after treatment of the first episode of depression, approximately half of all patients will relapse. This risk increases for every subsequent episode (70% and 90% after a second and third episode, respectively). Of those who relapse, 79% do so within the first 6 months.

In another study, this one on African individuals, the pooled prevalence of relapse was found to be 60.66%, with a 52%-92% relapse rate in schizophrenia, 50%-90% in substance use disorders, and 65%-73% in bipolar disorder.

Caveat: Mental health data can often be inexact or spurious because of misreporting and difficulties with definition and measurement. Even if you apply a discount to some of these numbers, they look staggering – and yet the subject of relapse remains shrouded in silence (perhaps with the exception of substance use). Maybe we don't talk about it because living with a chronic, invisible mental health condition makes it impossible to form an idea of the 'normal' against which to measure the 'abnormal'? Maybe we learn to accept slipping, falling, and fumbling back up only to crash again as something banal and unremarkable – a feature and not a bug? Maybe we don't trust the feeling in our gut that things are getting bad again because unlike a returning tumour that shows up in a scan, we have no empirical tool to back up our experience? Or maybe it's just the shame that we failed, again?

I've been thinking a lot about the relapse mystery, even as I deal with what feels like the trillionth time my nervous system is getting flooded with a rancid cocktail of depression, paranoia, OCD, and accompanying self-harm and suicidality, throwing my world into terrifying chaos. There's something different about this episode. I feel like I've finally had enough. My default response when I register this level of desperation is to set out on a fact-finding mission. I try to gauge what science has to offer. But mostly, I collect stories from others who've been there so I feel a little less terrified and lonely. Today I am sharing my preliminary field notes from the trenches, in case you find them useful too.

For starters, remember that mental health is a spectrum or continuum, a scale with no etching labelled 'perfect'. A relapse is different from the ordinary dips that are part of the problem of living. It manifests when you plummet towards the 'distress' and 'disorder' end of the scale.

Next, note that in clinical parlance a relapse is not the same as a recurrence. Take depression, where a relapse is defined as 'the re-emergence of depressive symptoms following some level of remission, but preceding full recovery'. A recurrence on the other hand is 'the onset of a new episode of depression following recovery'.

While the line between the two phenomena can be blurry, recurrence rates are apparently lower than relapse rates. I am not sure what to do with that piece of trivia. Graciously enough, researchers who study this fine dichotomy are also aware that it's meaningless to patients, "who are likely to be less concerned with terminology and more concerned by the risk of ‘becoming unwell again’ and what can be done to reduce this risk."

As hard as it is for people wrestling with relapse, it's also a hairy topic for clinicians. To begin with, predicting the possibility of relapse with accuracy is almost impossible, even though childhood adversity, recurrent depression, presence of residual symptoms, comorbid anxiety, rumination, neuroticism, and age of onset of depression have been shown to be common risk factors. (Thanks Vedha Bharathi for leading me to this research).

The looming spectre of a relapse punctures the tall claims made by the medical profession, a PR nightmare if you will. A bigger problem is that honestly addressing relapse could undermine the fundamental reason patients seek out clinicians: to find hope.

The authors of the British paper cited above point out that one of the most critical decisions a clinician has to make is around the framing of depression as a potentially chronic, on-going illness rather than something that can be ‘cured’.

"Do patients want to have these discussions and is relapse something that concerns people with a lived experience of depression? Are such discussions required for all patients following a first episode of depression? How do clinicians decide when to adopt a chronic disease model of depression management and for which people aiming towards a more definitive treatment might be appropriate? Patient expectations and understanding may affect outcomes and so these are important questions to consider."