Author’s note: To protect my family member’s identity, I refer to the person described in this article as “they/ them.”
The significant inconsistencies within diagnostic systems used in clinical psychiatry and psychology are troubling for those given a diagnosis of bipolar disorder or schizophrenia. “Schizoaffective disorder,” “bipolar disorder,” and “autism” have come under intense scrutiny by the public and health care systems alike as these diagnostic categories continuously change. In turn, mental healthcare service users’ lack of understanding of clinical terminology and how clinicians arrive at their conclusions continues to strain relationships and drive a sense of helplessness.
My Loved One’s Story
I know this first-hand, as I am a family member of someone that has apparently been living with all three “disorders” (autism, bipolar, and schizoaffective). However, when they were first diagnosed nearly 30 years ago, they were said to have only bipolar disorder. Yet for those past three decades, they have gone through a variety of psychiatric interventions and treatment programmes but still have no more insight into their psychological distress than when they first became unwell. Having a diagnostic label given to them by someone in a position of authority seems to have provided them with a reason for their experiences. Yet it does not explain how to deal with these experiences, nor does it help them to unpack the complex and traumatic history underpinning their suffering.
My family member’s first sign of psychological distress, which led to their being referred to mental health professionals, was greeted with a wall of assessments, providing them with no more than a pathologizing label. There was no recognition of their traumas or the impact of trauma on their psychological well-being. For example, despite having experienced a traumatic head injury, by the age of 21, they had already received a series of ECT treatments but not a single MRI or CT scan.
Yet so badly had the system failed to address their trauma and the resulting social marginalisation that they claimed to have “felt better” after the ECT. I speculate that the reason they felt better was largely because the procedure had wiped out a significant proportion of their working memory. Later, this led me to wonder whether they actually had autism or whether the ECT had caused changes to their longer-term memory (in other words, brain damage). The only thing that the ECT couldn’t take away, it seemed, was the impact that the traumas had on their mood.
To me, they appear as if permanently living on a roller coaster, unable to disembark or to find a language to share what this chaos feels like. And so, their emotional inner world manifests as stormy moods and distracted thought patterns. It’s as if the constant turbulence of having to live on the roller coaster leads to an inability to be able to anticipate what another person thinks or feels. Communication therefore becomes difficult, if not impossible, leaving them in a perpetual cycle of interpersonal and social isolation which further impedes their mental health.
The Problem with Labels
Now, years and potentially barrels of antipsychotic drugs later, they continue to struggle with their mental health and were recently told that in addition to bipolar, they “have” schizoaffective disorder and autism. I can’t imagine how confusing this must be to my family member.
In addition to being confusing and alienating, all three diagnostic labels have questionable validity. For example, according to the literature, “schizoaffective disorder” is one of the most misdiagnosed disorders due to the variation in individual experiences and lack of epidemiological research within this population. As a result, the criteria for schizoaffective disorder have changed several times since they were first published in the Diagnostic and Statistical Manual of Mental Disorders (DSM) in 1952. At the same time, the DSM still uses the eugenicist-influenced paradigm of 19th-century psychiatrists Emil Kraepelin and Eugen Bleuler, who developed the term “schizophrenia” to describe a deteriorating psychological status. This included disorganised speech, delusions, dementia, and nonconformity to the social etiquette of the time.
The instability of these categories seems to be influenced by three factors. The first is a lack of common symptoms of “schizophrenia” across a cross-section of today’s population. This problem stems from the “Kraepelinian dichotomy,” the late 19th-century separation of psychosis into two distinct mental disorders: schizophrenia and manic-depressive illness ( bipolar disorder). The second factor is the way definitions of so-called mental disorders change over time as populations become more diverse and socio-economic and political climates change. Although how these diagnostic categories apply across non-Western cultures and ethnicities has yet to be considered.
Finally, there seems to be a significant grey area in which the symptoms listed in the DSM under these diagnostic categories overlap. This overlap is leading to a margin of error in which people’s experiences of psychological distress are open to the subjective interpretation or confirmation bias of the diagnosing clinician. As a result, the term “schizoaffective disorder” has come to exist — an example of a flawed, biologically driven theoretical framework used to classify mood disorders and psychosis as distinct illnesses. Similarly, the concept of autism has shifted and broadened to the point where two individuals displaying radically different types and degrees of disability or unusual behaviour may be placed on the same “spectrum.”
Furthermore, as if the merry-go-round of diagnostic variation and questionable validity weren’t enough, we also have to tackle the striking lack of consideration for the history of the individual patient— in our case, someone who experienced severe physical and psychological trauma and a head injury at a young age.
Shifting My Perspective
I sometimes wonder whether I have made things worse for my family member by suggesting that they connect with various networks designed for people who share the pathology with which they have been labelled. Now, however, they have three labels, two of them new. In my ignorance, I suggested joining a network for autistic people and a bipolar support group. I soon became conscious of how, in my efforts to console and support them, I ended up making my family member feel even more “abnormal” and alienated than before. As if life isn’t hard enough living on a roller coaster! I realized that I can’t take away their psychological pain; neither can I help them to process a recent event that culminated in a manic, anxious episode. Instead, I tried to divert their emotions and re-channel them to finding a “support group.”
I wonder how, after hours of searching for autism and schizophrenia support groups, they must have felt about being told that they are inherently, trilaterally, mentally ill, and to be sent home with no support and no hope of ever integrating with “normal people.” In attempting to defer their next episode of mania prompted by the worry that they will never make new friends due to their “conditions,” I wonder if my efforts are no better than another cold, clinical, life-ruining consultation. Clinical consultations that culminated in more drugs for a supposedly long-term and inherently untreatable disorder whose definition changes each time psychiatry comes out with a new edition of the DSM. The very idea of prescribing a “support group” seems just as impersonal as these drugs that, after nearly 30 years, have not resolved my family member’s mood swings. It seems there are few other options. My disturbing realisation is that no other support exists for this person.
So, I try to coax them into accepting what I believe to be a rational solution and having what I believe to be insight, as if insight is a light somewhere inside of their head that can be switched on. But just imagine an Olympic gold medallist sprinter running 100 meters on speed and you may be getting close to how fast this person’s thoughts race through their head, and not by choice. I slowly realize that resolving psychological distress is not as simple as pressing buttons (or neurotransmitters) on or off, or even about insight. It’s about my family member feeling able to occupy the space within and outside of their own body whilst navigating the boundaries laid out by social and cultural rules created by other people.
I wonder if I have inadvertently turned them into a walking pathology by suggesting they join the autistic spectrum group and bipolar network instead of just throwing their labels out the window and accepting that my family member is having a period of psychological distress? It seems to be a circular question: On the one hand, this person needs support, but on the other, they are strapped to a rollercoaster travelling upside down at G-force 7. Meanwhile, I am stationary on the ground watching them on the rollercoaster and there’s not much I can do but accept them as they are.
I decide to accept that suffering is the price they have paid for multiple traumas addressed not with therapy but with a series of ECT sessions and nearly three decades of drug treatments that they didn’t ask for and that quite frankly have not cured anything. I try to reassure myself that I may not be able to join them on the roller coaster, but I can try and slow it down and perhaps one day even help them to disembark.
I now realise that perhaps there are diverse ways of being in the world and my role in this relationship is not to help them get off the roller coaster and be emotionally stable or even to see the world as I think it should be seen. My role as a family member is to help them to regulate the speed at which they travel through the world. I decide that I must acclimatise myself to what I now see as an alternative version of reality by adjusting my pathologizing lens and accepting that there are different varieties of normal. Perhaps, in this way, I may alleviate the stigma of “mental illness” I sometimes project onto my loved one and the accompanying stress this brings them.
Instead of seeing their behaviours as irrational and impulsive and trying to remodel them, I could remodel my own perceptions to think about how it must feel to engage with the environment when travelling upside down at G-force 7 through every interaction. When I begin to do this, what I initially perceive as their incomprehensible and unstable emotions soon translate into ways of coping with turbulence and chaos. Each person that I encounter with the same diagnoses has a different story and unique way of dealing with this turbulence.
I also remind myself that for every negative pole there is a positive one. There is more than one way of interpreting an experience: from my own position and from that of the person I am communicating with. Removing assumptions evoked by my family member’s diagnostic labelling through empathetic listening has not only transformed my understanding of their experience. It has also increased my ability to arrive at solutions that are applicable to their expressed needs. This is not a denial that mental health problems exist but an acknowledgement that distressing experiences need to be contextualised: based on the individual as a whole person rather than single factors. I now understand the terms “bipolar,” “schizoaffective disorder,” and “autism” as part of a limited, bio-medical interpretation of complex experiences. Instead of relying on these interpretations, I listen objectively to the person having the experience, without the label.
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.