It’s so interesting to listen to people talk about their experiences with mental illness. I’ve heard such a range of stories, from those who became unwell, received an accurate diagnosis and useful treatment, and drastically improved, to those who first suffered the terror of developing mental illness and then the terror of inaccurate, incomprehensible, and traumatic diagnosis and intervention. One of the areas I’ve noticed people have a range of reactions to is this issue of diagnosis, and whether labelling people’s behaviour and experiences is helpful.
The central idea behind the labels used in mental illness was to be able to group people’s experiences into similar categories and give them a name so that it was easier for one doctor to communicate to another what kind of struggles a person was having, and so that things that were found to benefit the majority of people in a group could be made available for them. Born out of the medical model, mental illnesses are listed as diseases, with the presumption that the processes can be measured, will be found to have a clear cause, and always only involve deficits. The reality is more complex, mental illnesses seem to function more as syndromes – clusters of ‘symptoms’, causes likely to be a combination of factors, and numerous subgroups who experience different sets of symptoms and respond best to different treatments. That’s still a medical model framework, and doesn’t account for people’s experiences that are positive, while still being different from the norm, or for the idea that some psychological processes seen as illnesses may be healthy responses to overwhelming circumstances.
When labels are experienced as helpful one of the things I hear most often is a relief that confusing and frightening experiences have a name. With a name, they can be talked about. There is a language to describe them, to take the intangible and the terrifyingly personal and communicate about it to another person. For myself, I have experienced dissociation for as long as I can remember. I didn’t encounter the word to describe it until I was in my 20’s. Prior to that I had no words to explain what I was experiencing, and no way to understand why I felt different, the nature of the gulf between me and my peers. That difference was formed by many things, such as The Gap, but I wasn’t able to express or understand the tremendous difference in the way I functioned. With no words for it, I was absolutely alone in it, unable even to ask for help. We need names for things to be able to talk about them. Many people are deeply relieved to discover their difficulty has a name, be it depression or mania or dissociation.
I’ve also experienced the enormous relief of discovering that reactions I didn’t like or understand in myself were part of a condition, PTSD, instead of just my own personality. Being able to locate my troubles as separate from me helped me to feel less shame and humiliation about them.
Labels also give us a community. With a label we have a chance of linking up with other people who’ve struggled with the same things and feeling less alone. There is a pool of resources (hopefully) we can seek out, books, community groups, organisations who exist to share information and strategies to manage your particular condition.
This experience of community can also be one of the things people find terrifying about labels. Labels are black and white. Many people have had the distressing experience of being hospitalised and aghast about their new ‘peers’, the other patients. There’s little room for degree, and people remember the extremes and the most unwell. A person diagnosed with MS immediately pictures wheelchairs and severe disability, a person told they have schizophrenia dreads a future of long term hospitalisation and unrelenting psychosis. For those of us who’ve come from a world divided into them and us, the sick and the well, the disabled and the rest of us, it’s a huge shock to the system to suddenly find ourselves in the other camp. We may reject our label, deny, downplay our symptoms, protest about all the things we can still do…. and at some point perhaps, realise that the entire rest of the disability community are saying exactly the same thing, and readjust our view of the world a little.
Where labels hurt is where they define us to the exclusion of all else – a person with Borderline Personality Disorder becomes “the Borderline”, instead of somebody recovering from a mental illness. Labels are also things we live to, children treated as if they are smart, hard working and will do well in school tend to live up to those expectations. The reverse also applies. Told we will be profoundly disabled, we will have our condition our whole life, we will never be able to work again or live without meds or have ‘normal’ relationships or live independently – many of us will live to fulfil those predictions. (a few of us with a tendency towards rebellion will use them as impetus to accomplish exactly whatever we were told we couldn’t) Labels can box us in, hold us back, define our world in a way that is deadening and takes away hope.
Labels can also cut us off from each other and from resources that are labelled in a way we’re not familiar with. I’m constantly coming across information in different areas that have developed independently. Because of our tendency as people to specialise, often useful ideas and resources are locked away in different areas. It needs people with broad interests, or experience in several different areas to link things back together. For example, people struggling with self harm have been developing comprehensive lists of grounding techniques – but few people struggling with dissociation have come across them even though my experience has been they are very helpful for dissociative symptoms. People who have a severe anxiety disorder don’t have access to great work being done about reducing ‘exposure anxiety’ for people with autism. People with MS talk to each other about ways to cope with symptoms such as numbness, muscle weakness, and chronic pain, but no one with Fibromyalgia is likely to pick up a book labelled MS and read about these, even though they have those same symptoms. People with a physical illness or disability are often deeply reluctant to seek help or information for emotional distress such as anxiety or depression because they need to view their symptoms as physical and collecting another label would only depress them further. Labels can set up a false separation between us, and cut us off from communities and information that would be helpful. For people with very rare conditions, labels leave them feeling deeply alone and envying people with more common conditions, and money and organisations to support and advocate for them.
I don’t care if you feel lonely because you have social anxiety, experience the classic negative symptoms of schizophrenia such as withdrawal, or are too exhausted and overwhelmed by your severe arthritis to get out of the house. That experience of loneliness is something each of these people have in common, and each could be a great support to the other. In our Voice Hearer’s Group some people have a psychotic condition, some a dissociative disorder. Some people hear voices as if someone is standing next to them speaking, others hear them within their mind. Some people have no diagnosis, or do not hear voices but hear or see other things. There is tremendous diversity in our labels, but we are united by a difficult experience, a need to speak about it and connect with other people. Labels that encompass whole complex conditions such as Bipolar can be less useful at times than a language to describe things such as anxiety, slow wound healing, or hallucinations. There’s a lot more common ground out there than we may think, and a lot to be learned from other people, however different their labels.
Sarah K Reece 