The Stigma of Stigma

It is a sort of onomatopoeia—stigma. It sounds harsh, a cruel brand. Stigmata: a mark of disgrace or, in medical terms, a visible sign or characteristic of a disease, such as a mark on the skin, a rash or lesion.

Except that mental illness does not usually have a mark. The wounds are internal, lesions of the mind, and the paradox is that the lack of visible stigmata creates the stigma.

If someone hobbles down the street with a plaster cast on their leg, people often smile in sympathy, or even offer to help carry things if the hobbler is trying to balance bags and a crutch or walking stick. Yet if someone walks down the street talking to themselves, loudly involved in a frantic inner dialogue, most people will shy away, fast. But perhaps the person in the plaster cast broke their leg while blind drunk. Perhaps they injured others. Perhaps they were driving.  And maybe the person walking down the street has been driven to a psychotic breakdown by grief because someone they loved was killed by a drunk driver. We stigmatise one, but not the other.

That is an overly dramatic comparison, but it is to make a point. And what is perhaps the most poignant aspect of this point is that the worst stigma of all in mental health is self-stigma, our judgement of and against ourselves. A common figure used to illustrate this comes from the country with supposedly the most open and robust attitude towards mental health in the world, the US: the majority of those struggling to live with depressive disorders do not seek help for an average of ten years into their suffering.

Ten years.

Maybe there will be chunks of those ten years that might not be so bad, but it probably means around 3,000 days of waking up with the dread of how to survive the day ahead, of living in fear of everything, of being over-whelmed by the simplest decision, of not remembering what it really feels like to feel alive, let alone how to experience joy.

This is really a form of madness, this stigmatising. But it is also a very human response, a primal one. Evolution designed us to protect ourselves, and an important part of that is what is referred as the disease avoidance response. It is natural for us to shy away from someone who might be infectious. It is mapped into us at a deep and unconscious level. If you watch footage of crowds moving on streets there are moments when people seem to move as a shoal of fish, heading as one in the same direction. On closer inspection if often proves that someone in the crowd was coughing badly, or sneezing, and so the primal response was for people to move to a safe distance, beyond the spray range of the germs.

To take on stigmas also means rebelling against aspects of our evolution and its drive for self-protection. It is neither easy, nor comfortable, but having a sense of the profound pain of isolation creates empathy, a potent weapon against stigma. Surely almost everyone alive has experienced loneliness? If we dive into the memory of how that feels, of how profoundly and cruelly alone it can make us feel, then it becomes easier to rebel against stigma, to reach out rather than to recoil.

This morning at our main clinic in Kashmir we were role-playing a case about sexual abuse: a young man who was abused many times by his eldest brother. Even though our team here is sadly familiar with this kind of abuse they still react when the ‘bomb is dropped’ during the role-play, as in the moment when the person playing the role of the abused young man admits to the abuse. Even after years of training they have a mix of responses, the equivalent of a sharp intake of breath, of judgement, but at the same time there is a sadness in their eyes, of sympathy, of empathy. It is the latter that we work on, as much as is humanly possible in the face of our primeval response to what we find horrifying.

Perhaps the first step of the rebellion against so many stigmas is to understand them as a perversion of self-preservation, and from there we can push back against these distortions.