Author: Gunjan Sharma

GS is a medical student at Cardiff University. She has an interest in Global Mental Health, Medical Humanities, Anthropology and the link between Healthcare and Philosophy (for example, the link between moral responsibility and psychopathy). She is particularly interested in a career in Forensic Psychiatry, and the role of mental disorders as symptoms of society.

In her spare time, GS is an avid reader with a to-read list of over four hundred books long. She reads a wide-range of genres, from Fantasy to non-fiction. She is a strong believer in the spoken word and has an odd habit of memorising poems.

Prizes: Prizewinner of the 2014 Careif Suicide Prevention Essay Competition.
Joint Prizewinner of the 2016 Medical Student Essay Prize of the Forensic Faculty of the Royal College of Psychiatrists.
Prizewinner of the 2016 Medical Student Essay Prize of the Spirituality Faculty of the Royal College of Psychiatrists

Categories
Disability Issues Lifestyle Reflection

Personality Disorders

In individuals, insanity is rare; but in groups, parties, nations and epochs, it is the rule.
– Friedrich Nietzsche

Personality Disorders (PDs) are defined by the DSM-V as significant impairments in the self and interpersonal functioning across time, which cannot be explained by socio-cultural environment or substance abuse (American Psychiatric Association 2012). These disorders are unique within psychiatry because, unlike many of the Axis I disorders, they did not begin to take form until the 19th century. They also tend to create controversy around their definitions, as they are molded by the behavioural standards within a society, and are therefore quite subjective. This subjectivity may be the reason why personality disorders have the lowest levels of reliability and validity among all psychiatric disorders (Alarcon et al. 1995).

There is an important difference between personality styles and disorders, and clinicians must be able to make this distinction. As society changes, roles and values are transformed, leading to the creation of new disorders. One example of this is  internet gaming disorder.

Perhaps we should start by clarifying our terms: what is personality? Is it something that is inherent and unchangeable? Or is it a malleable entity, a wisp of smoke that can never be grasped; a question to hang above the philosophers’ heads? In 1995, Alarcon et al. suggest that personality implies a way of reacting to stimuli, coping with stress and acting on one’s beliefs about oneself and the world. It has been suggested that a personality disorder is almost a caricature of the normal personality, and that it can reflect the distorted aspects of a person’s time and culture.

Society plays a very powerful role when it comes to psychological disorders. It has been suggested that prejudice can distort societies’ perceptions towards those from disadvantaged backgrounds and inflate the rates of personality disorders in these groups. For example, it has been suggested that almost half of inner city youth who have been diagnosed with antisocial personality disorder have been misdiagnosed, because their behaviors are occurring in a unique cultural context; a context which includes the prevalence of behavioral systems which value violent behavior as an acceptable survival strategy (Alarcon et al. 1995). Furthermore, antisocial behaviour could be seen as an adaptation to the excessive demands of our modern world. With the increasing expectations placed upon our youth, not only for wealth and success, but also for a ‘happy’ life with a spouse and child, a fast car and a big house, is it any wonder that many kids rebel against such idealistic expectations? Perhaps it is society that is towing the soil, encouraging the growth of such ‘pathological behaviour’ in our culture. Are we simply pushing humanity too far?

Borderline Personality Disorder (BPD) is another example of a personality disorder that has become increasingly common in the modern world (Grant et al. 2008). Those who have ever set foot on a psychiatric ward will be familiar with the label, as it is the most prevalent category of personality disorder within the mental health services (National Collaborating Centre for Mental Health, 2009).

BPD is a relatively new diagnostic entity, first described in the 20th century. Although people committed suicide in the past, self-harm in the form of wrist cutting is relatively new, only appearing on psychiatry’s radar since the 1960s (Favazza, A.R. 2011). As societies evolve, symptom banks change, and in today’s world there appears to be an increasing acceptance of self-harm as a signal of distress– a phenomenon termed ‘social contagion’ (Jarvi, et al. 2013). Traits underlying BPD are impulsivity and affective instability. In today’s world, these impulsive symptoms are one of the most common forms of expressing distress among the young. Indeed, it has been suggested that BPD risk factors are associated with modern life (Paris and Lis 2013).

Do we as a society place such high expectations on those around us that we must fall back upon psychological labels to explain away those who do not fit into our idea of perfection? I suggest that perhaps this sudden surge in personality disorders does not merely reflect our increasing awareness of such pathologies, but also a deeper issue within modern society. Perhaps we have become so obsessed with success, with money, with beauty, that we have forgotten what it means to be human. To love, to feel, to belong.

And if this is true, then the answer lies not within the leaves of a doctor’s prescription pad, nor within the four walls of a hospital ward, but in the society that we have created for ourselves. Perhaps this rise in personality disorders, this explosion of emotional distress, is a signal that the world we have created for ourselves may be doing more harm than good. The increasing emphasis on achievements, success, wealth, and fame may indeed be turning into a poison. And if this is the case, then the antidote lies beyond the physicians’ hands; it is a task that is placed on all of us, to encourage our children to create a world for themselves that is filled with love and belonging, rather than goals and desires. It is only through an increasing emphasis upon our own humanity that we can begin to combat this psychological plague.

References

  1. Alarcon, R., Foulks, E.F. 1995. Personality Disorders and Culture: Contemporary Clinical Views (Part A). Cultural Diversity and Mental Health. 1:3-17
  2. American Psychiatric Association. 2012. DSM-IV and DSM-5 Criteria for the Personality Disorders.
  3. Chavira, D.A. et al. 2003. Ethnicity and four personality disorders. Comprehensive Psychiatry. 44:483-491
  4. Favazza, A.R. 2011. Bodies under Siege: Self-mutilation, Nonsuicidal Self-injury, and Body Modification in Culture and Psychiatry. 3rd Ed. JHU Press.
  5. Grant, B. Stinson, F.S., Saha, T.D., Smith, S.M., Dawson, D.A., Pulay, A.J., Pickering, R.P., Ruan, W.J. 2008. Prevalence, correlates, disability, and comorbidity of DSM-IV borderline personality disorder: results from the Wave 2 National Epidemiological Survey on Alcohol and Related Conditions. Journal of Clinical Psychiatry. 69:522-545
  6. Jarvi, S., Jackson, B., Swenson, L., Crawford, H. 2013. The impact of social contagion on non-suicidal self-injury: a review of the literature. Archives of Suicidal Research. 17:1-19
  7. National Collaborating Centre for Mental Health. 2009. Borderline Personality Disorder, The NICE Guideline on Treatment and Management. The British Psychological Society, The Royal College of Psychiatrists.
  8. Paris, J., Lis, E. Can sociocultural and historical mechanisms influence the development of borderline personality disorder? 2013. Transcultural Psychiatry. 50:140-151

Featured image:
Female Warrior # 14 “Extinction” by CHRISTIAAN TONNIS

 

Categories
Disability Issues Lifestyle Opinion

Hearing Voices

“In examining disease, we gain wisdom about anatomy and physiology and biology. In examining the person with disease, we gain wisdom about life.”
― Oliver Sacks

Hallucinations are a window into the mind. They illustrate the complexity of the human mind and the pathways that can lead us astray. Art has explored the idea of madness over the centuries, translating paranoia into tragedies, delusions into dramas. It is only in the 20th century that hallucinations have been described as a sign of illness. In the past, hearing voices used to be linked with saintliness and spiritual enlightenment: a path towards God. Hallucinations are also heavy with cultural meanings: we can look back at Moses and the burning bush or Buddha beneath the Bo tree. Different cultures prescribe meaning to different senses: Protestants emphasise hearing while Catholics emphasise vision. Perhaps most interestingly, West Africans partake in kinesthesis; Westerners distrust unusual sensory experiences and label them as pathological.

The term auditory verbal hallucination refers to hearing a voice in the absence of an external stimulus. Auditory hallucinations are more common within the general population than many of us may think, especially in times of stress: up to 70% of people have been found to hear the voice of their dead relative during bereavement. Most of the people who report auditory hallucinations within population studies do not report any distress or impairment; they are able to live happily alongside these voices within their heads. Some people find that their voices can give them guidance through difficult times, while others see them as a companion or a best friend. After all, we do not consider it abnormal for a child to report that they have an imaginary friend. This relationship between the person and their voice is incredibly complex – as complex as any other relationship we may encounter, and we must tread softly when we deal with such intimacy.

Hearing Voices as a Disease
Hearing voices is not the same as having a sore throat. Hearing a voice can have a deep significant meaning to the person in a way that a sore throat cannot. So what makes the voice pathological?

Western Society sees hallucinations as pathognomonic of a serious mental health disorder. Serious psychotic disorders are however recognized across all cultures with a similar pattern of symptoms. Hallucinations that are linked with serious psychotic disorders are described as ‘pathoplastic’ – that is, they are shaped by local meanings. Behind the response to voices is the attitude of society. The society we grow up in has a lot to say about the meaning of these voices: Mexican-American relatives are more likely to display tolerance and sympathy for a relative hearing voices compared to Euro-American families, who are more likely to display criticism and hostility. If you grow up in a society where you are taught that hearing voices is wrong, this will affect your relationship with them. Imagine if you were a child hearing voices, and you turned to your parents to support and found they were even more afraid of the voices than you. Would you see your voices as an enemy, or a friend?

People experience the mind and its underlying symptoms differently depending on where they grow up. Prof Luhrmann found that US patients self-identify as schizophrenic, using the diagnosis to describe their condition through textbook definitions. They accept the medical diagnosis and are even able to recite the medical criteria – for them, the meaning of the voice is “to be crazy.” In general, the American sample did not treat their voices as a person and many of their voices were filled with violence. On the other hand, in Accra people described voices as a spiritual attack. Half of patients reported hearing only positive voices. Even when hearing negative voices, individuals also described good voices telling them to ignore these negative influences. Some people in Accra even said these voices kept them alive. In India, hearing voices is viewed differently yet again. Many of the doctors don’t mention a diagnosis and families don’t ask. None of the patient’s believed they had a devastating illness, and thus compared to the West, most of them expected to get better. Does this suggest that people suffering from hallucinations in the developed world have a better quality of life?

It has been suggested that within the Euro-American culture, an individual who is unable to distinguish between reality and imagination is labelled as pathological, while in many non-Western societies such rigidities do not exist. But this labelling goes beyond cultures; it transcends time. Mitchell and Vierkan compared hallucinations in an East Texas hospital both in the 1930s and then in the 1980s. They found that command hallucinations of the 1930s were found to be more religious, such as “lean on the Lord,” while those of the 1980s were more destructive, such as “kill yourself.” Perhaps such changes reflect the hostile environment we have created for our patients, and thus leads onto the questions: are we treating our patients with a dignified and open manner? Do we treat them as fellow individuals?

If you do not envision schizophrenia as a life sentence, you increase the chance that patients will be able to discover their own resilience.
– Prof Luhrmannn

Hearing Voices as a part of Life
In 1987 psychiatrist Marius Romme appeared on Dutch television with his patient Patsy Hague, a voice hearer, to publicise his new approach to voice hearing – that attributing meaning to one’s voices changed the way one responded to them. Four hundred and fifty people responded to this television appearance, reporting that they heard voices. More than half of the people who responded had never sought professional help: they lived happily with their voices. From this stemmed the world’s first Hearing Voices Congress held in Holland that year, and from this then grew the Hearing Voices Movement.

The Hearing Voices Movement states that hearing voices is part of human variation. It rejects the pathologising of auditory hallucinations and emphasizes empowerment of the individual. The Movement combats the stereotype of the “all-powerful psychiatrist” by giving more control to the voice-hearer and viewing the hallucinations not as a disease but as a key part of their identity. Eleanor Longden, a lady diagnosed with Schizophrenia is one example of how such a movement can have a significant impact on a person’s life. Below she describes how her meeting with the psychiatrist, Pat Bracken, became a turning point:

“[he] didn’t use this terrible, mechanistic, clinical language but just couched everything in normal language and normal experience”

Her story illustrates the road from “schizophrenic” to “voice-hearer” – from the clinical language of disease to the everyday language of emotions and experience. The stories of those diagnosed with schizophrenia can often be seen as disordered and incoherent, lacking any meaning. They are seen as having a defect. They are not entitled to a story. Hearing Voices Groups across the UK give people the opportunity to come together and share such stories in an open and trusting environment. The narrative contexts are the foundation blocks upon which these voices grow. It has been suggested that the inability to share stories about the self is part of the origins of psychopathology. We as healthcare professionals need to emphasize the point that hearing voices does not always lead to a life-long sentence of medication and institutionalization, as described eloquently by Eleanor Longden below:

If someone is reporting that they do not want their voices to stop then we must not automatically jump to the conclusion of poor insight. When the voices are distressing it is important to develop coping strategies that address this distress rather than the symptoms themselves. The problem is not the voice but the relationship one has with them. The goal of the Hearing Voices Network is for people to learn how to deal with their voices as one would deal with annoying roommates: with respect.

It has been argued that in Western medicine, doctors focus too much on a person hearing voices and not on what they say. Thus, anti-psychotics are seen as the answer with the devastating side effects described as a sacrifice for bringing someone back to the ‘norm.’ In order to understand the voices heard by our patients, we must first improve our knowledge of the cultural and social environments in which our patients reside and the practices and beliefs that our patients hold dear. If a clinician cannot take into account the cultural context of his or her patient, they cannot respond appropriately to their distress. And if a clinician is unable to respond appropriately to their patient’s distress, how can they ever hope to alleviate it?

“People with thought disorders do not keep a list of famous and successful people who share their problem. They can’t, because there is no such list. Comparatively few schizophrenics lead happy and productive lives; those who do aren’t in any hurry to tell the world about themselves.”
– Elyn Saks

 

References
1. Woods, A. et al. Interdisciplinary Approaches to the Phenomenology of Auditory Verbal Hallucinations. Schizophrenia Bulletin. 40:S246-S254
2. Laroi, F. et al. Culture and Hallucinations: Overview and Future Directions.Schizophrenia Bulletin. 40:S213-S220
3. Luhrmann, T.M. 2011. Hallucinations and Sensory Ovverides. Annual Review of Anthropology. 40:71-85
4. Woods, A. 2013. The voice-hearer. Journal of Mental Health. 22:263-270
5. Vaughan, S., Fowler, D. 2004. The distress experienced by voice hearers is associated with the perceived relationship between the voice hearer and the voice. British Journal of Clinical Psychology. 43:143-153
6. Ritsher, J.B., Lucksted, A., Otilingam, P.G., Grajales, M. 2004. Hearing Voices: Explanations and Implications. Psychiatric Rehabilitation Journal.27:219-227

Featured image:
Sound Waves: Loud Volume by Tess Watson

Categories
Disability Issues General Lifestyle

Deafness as a culture

“Try not to associate bodily defect with mental, my good friend, except for a solid reason”
– Charles Dickens, David Copperfield

What is the first thought that pops into your head when you think of the word deaf? Do you think of a disability? An inability to function in society? Do you think of loss? Of a deficiency in one of the most vital senses? Or do you think of group of people with similar values and beliefs, brought together through their experiences?

The medical model sees deafness as a disability, an impairment that needs to be fixed. A disability is defined in the Oxford Dictionary as a physical or mental condition that limits a person’s movements, senses or activities. In this sense, one could agree that deafness is considered a disability. However, deafness comes in two forms: deafness, indicating disability, and Deafness, indicating a culture.

Culture is defined as the ideas, customs, and social behaviors of a particular people or society. Deafness can therefore be viewed as a disability or an altered human experience. Deaf culture can include beliefs, behaviours, traditions, history, and values of the community. Deaf culture is an ethnocentric culture, based more upon sign language and relationships rather than a common native land – it is a global culture. Deaf Culture sees itself as a language minority than a disability.

 

Values and Beliefs

A culture tends to have its own beliefs and customs that are shared by its members, and deaf culture is no different. Deaf social protocol is based upon maintaining good visibility with others in the environment (Deaf Culture 2014).

Some examples of social customs within this culture include:

  • Rules of etiquette for getting attention and politely negotiating a signed environment
  • Keeping one another informed of what is going on in one’s environment – for example, letting someone know that one is going to the bathroom (in the hearing environment this is often not needed)

 

Arts and Literature

As with other cultures, deaf culture is rich in history and art. Storytelling also makes up a big part of the culture. Clayton Valli was an American deaf linguist who created works in ASL performed through handshape, movement and facial expression. One of his pieces of work, called Dandelion can be found here.

There is also a National Theatre of the Deaf in the USA that involves productions using ASL and spoken word. Their mission statement is to educate the public and open their eyes and ears to deaf culture (National Theatre of the Deaf 2014).

Media is a vital component in getting ones message heard, and many artistic groups throughout the world have increased awareness of deaf culture, helping to stem ignorance and begin a conversation about the experience of being deaf. Movies and TV programs also need to start promoting deafness not as a pathological condition but as a way of life, helping to banish this perception of disease and impairment.

 

Cochlear Implant Controversy

Cochlear implants are electronic devices that can be surgically implanted in patients who are deaf due to sensory hair cell damage. They can provide hearing in order to increase understanding of speech, and it is estimated that 324,000 people worldwide have received them as of 2012 (NIDCD 2013).
Although this may seem like an incredible treatment for those who have difficulty hearing, it also gives the suggestion that deafness is a condition that needs to be fixed. Some deaf people are not so much against the cochlear implant, than what it represents: a lack of respect for their culture. Indeed, some people have gone so far as to describe these devices as a means of cultural genocide.

It can be argued that deafness, as a cultural identity, should be encouraged to thrive and be supported in today’s diverse society. Others believe that every child should be given an equal chance in life. Through cochlear implants one will have opened the door to greater opportunities, such as better chances of finding employment, integrating with the community at large, and achieving a greater level of success. But why should a deviation from the norm result in fewer opportunities in the first place? Shouldn’t we be dealing with this inequality rather than trying to cover it?

Doctors may see a deaf child as missing something vital, being impaired and therefore not able to function in society. The word impairment implies fault; imagine the implications this can have on a child who is told they need to be fixed. Children should feel proud of who they are, not ashamed of what they were born with. What kind of impact would such thoughts have on their self-esteem? We all know how isolating it can feel to be different during childhood; why should we push these children further away from society?

Cochlear implants are seen as being oppressive: an illustration of our overreliance on the biomedical model. Instead of seeing a child as impaired, it would be more helpful to see the child as having a different natural language. We live in an age where we preach about acceptance and diversity. Shouldn’t we be embracing the deaf culture instead of annihilating it?

What does this mean about the future? If we find the cure for deafness tomorrow, does that eradicate an entire culture? Will there be people out there who will refuse to accept the cure for their child? And what implications will that have on the medical profession – can we accept this refusal? After all, every child deserves the best start in life. Where do we stand between respecting ones beliefs and doing the best for our patient?

 

Diversity

It has been suggested that deafness can be an isolating experience; you are part of a minority, cut off from the rest of the world. One could also argue that there are plenty of cultural minorities out there; despite English becoming more and more vital in our multicultural environment, there are many minor cultures out there who do not have English as their native tongue and are therefore cut off from a large part of civilization. Does that stop them from being a culture?

Diversity is a good thing: it is what makes society grow. It is needed for creativity, for quenching ignorance and progressing as a race. What is considered normal in this day and age? Having an illness gives you a new identity, a new way of looking at the world and translating your surroundings. What is considered illness to one person is considered normal to another. By embracing the different views on deafness, we embrace the diversity of mankind and what it has to offer.

 

References
Deaf Culture. 2014. Comparative chart: deaf and ethnic cultures [Accessed: 17thDecember 2014]
Deaf Cultural Centre. Arts & Culture [Accessed: 17th December 2014]
Jones, M.A. 2002. Deafness as Culture: A Psychosocial Perspective. Disability Studies Quarterly. 22:51-60
National Theatre of the Deaf. 2014. About the National Theatre of the Deaf [Accessed: 17th December 2014]

Featured image:
DEAF project #5 by Dario-Jacopo Lagana’

Categories
Opinion Reflection

Dear Doctor

Dear Doctor,

I hear you when you speak of that girl in the hospital ward. The ‘overdose in bed three.’ I hear the harsh judgements sneering through your lips, the sighs and the mutterings of ‘what a waste of life.’ As a student, I am all too privy to such remarks made in the corners of these hospitals. I have fallen upon them again and again.

Please do not be so quick to stereotype. Do you know how it feels to have your mind infiltrated by such intense emotions of self-hatred and loathing? Do you know how lonely it can be to lie curled within the four walls of your bedroom, just you and your mind waged in an eternal battle?

Yes, I realise how cliché that sounds. I know you have just come back from speaking to a young gentleman who has been paralysed. I know you have spent your years dealing with the terminally ill, holding the hands of the dying as you speak to a family overwhelmed with grief.

How can a teenage girl compare? Yes, she may appear to have everything. But aren’t humans’ more than just molecules and proteins? Don’t we all have dreams and desires of our own? What is it that makes us human? Our relationships, our goals, our ability to connect with one another. How would you feel to have these vital components torn away from you? No, it is not the equivalent of the man next door whose wife has just died. But that does not mean that she does not deserve your attention and your respect. You may have lived through the battles of the emergency department, the grievances of the families, the diagnosis’s of tumours to children barely in their teens. But she has not.

Look at her, sitting on the bed, her head bent over her lightly covered shoulders. Look at her, fingers fidgeting with the bed sheets, unsure what to touch or who to speak to. She is scared. She is in a new place. There are bright lights glaring down upon her, strangers rushing past her, eerie machines beeping at her. And inside her mind, the battle is continuing to rage. Look at the scars glistening upon her skin as she cowers in a blanket, trying to hide her wounds from the world. Aren’t those battle scars as well?

Imagine how it feels to have a mass of doctors suddenly gathering around your bed, all looking upon you with pity. Do you realise how exposed it can feel to be probed with such personal questions? The intricacies of your mind held open for a stranger to dissect.

‘Do you have any plans to end your life?
What methods have you thought about?’

She needs a friend. She needs someone to take her hand and ask her how she is feeling. Forget the Fluoxetine, the charts filled with drug doses. It is not a prescription pad that she needs. She needs a human touch.

I know she cannot hear you as you make your curt remarks. I know you will walk towards her filled with smiles and concerning eyes. I have seen that gentle handshake that you have mastered over the years, the slight pitch in your voice as you gently prod your questions. There is no doubt that you have a bedside manner. And within one minute you are gone, the prescription chart left upon her bed for the nurse to dispatch the drugs. The girl still sits there, her posture unchanged, unsure if the conversation had taken place.

I know you are busy. I know you have a team of doctors to command, a list of patients to see, a hospital to run. Yes, I know you have sat through hours of exams, studied well into countless nights to get to where you are standing now. I have respect for the devotion you have put into your career.

But please do not forget that young girl. Please remember to hold your tongue the next time you see a teenage overdose. Yes, to you it is another statistic to keep record of, another prescription to fill out. But to that teen lying in the corner, throwing up the contents of her stomach? She wanted to die just two hours ago. Do you know how that feels? To feel hopelessness so deep, that the future is but one long tunnel, filled with uncertainties and fear. Do you know how it feels to hold a bottle of pills in your hand, staring longingly at the container, at the hope it contains inside?

Yes, she will be fine. She will be discharged within a few hours, another free bed to fill. But please, the next time you come across such despair in someone’s eyes, do just one thing; sit down on the bed beside them, and ask them how they are. Look into their eyes as they speak, and let your whole being be encapsulated by their story. Let them open up to you, with patience and empathy. If someone had done this to them before, do you think they would be in this position now?

Please, the next time you blurt out another cutting remark, a sneer at the cries for attention. Look across the room at your patient sitting there. Look at their posture, their body language, their eyes. Does this look like the sort of person who needs your judgement? Or does this look like someone who needs a listening ear?

 

Featured image:
Writing with Ink by urbanworkbench

Categories
Innovation Lifestyle

Pathographies

“Illness is the night side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.”
– Susan Sontag, Illness as a Metaphor

Words are important. They allow us to meet on a common ground, to share experiences and learn from each other. They can evoke every emotion and open new friendships. They can also be therapeutic, and a way to fill the gap between doctor and patient.

Pathographies, defined by the Oxford Dictionary as ‘the study of the life of an individual or the history of a community with regard to the influence of a particular disease or psychological disorder’, have become more popular over the years (1). Walk into any bookstore and you will eventually come across the healthcare corner: a small stack of books by people who have crossed the abyss into the land of ill health. Such stories speak of hope, love, loss, and despair as patients and their families come to terms with the sudden invasion into their lives. Treading through illness can be an isolating experience, filled with pain and uncertainty.

The Database of Individual Patient Experience is a UK-based charity that runs two websites: healthtalk.org and youthhealthtalk.org. It was created by Dr Ann McPherson, a GP who was diagnosed with breast cancer, but found that she had no one to talk to and share her experiences with. As a result, these websites are filled with patient’s experiences of their illnesses, how they coped, and their family’s reactions. Such websites can open a common ground for those who are suffering, those who are newly diagnosed, and the friends and family who may want to learn about how they can help.

“I am tired of hiding, tired of misspent and knotted energies, tired of the hypocrisy, and tired of acting as though I have something to hide.”
– Kay Redfield Jamison, An Unquiet Mind

How can they help us?

Pathographies are about putting the patient at the heart of healthcare and asking the question: can I truly understand what a person is going through if I have never suffered that ailment myself? By putting experiences into words a bridge is created, allowing those of us who work in healthcare to reach out that bit further. These stories can help us to take a step back from our jargon-filled lives; to not see the routine dialysis, but the precious hours spent with the husband; not the dry numbers of oxygen steadily increasing upon the hospital charts, but the feeling of accomplishment when one is able to take that first breath unaided. Illness is not just a list of problems that need to be crossed off. It is a continuous process filled with dark corners and dead ends.

In an increasingly globalized world, an appreciation of the cultural diversity lying upon our doorsteps is ever more needed. Everyone experiences illness in a different way. The culture we grew up in influences how we look at ailments (3) and the way we handle pain (2). It is through Pathographies that these worlds of illness and health are brought together, creating a narrative that allows us to delve inside the patient’s mind regardless of ethnicity or race. We look beyond the clinical terms, the graphs and the numbers, and not only does this help us to see the patient through a broader lens, it also breaks barriers with the next person we meet. This cultural understanding allows us to look after the ill in the way that they want to be treated – with dignity and compassion. It puts control back in the person’s hands at a time when chaos reigns. Pathographies can help to break the formulaic clinical story. A person is not a machine with a broken part, but an autonomous being with desires and goals, whose need for help cannot always be fit into a category.

All too often we can get caught up in the stereotypes: the smoker with COPD, the teenage overdose, the forty-year-old female with gallstones. We must remember our own biases as we sit in our staffrooms: our own assumptions built from our privileged educations. We no longer live in the world of the authoritative doctor dressed in his white coat. Instead, we let the patient’s words fill the silence.

Instead of opening another lengthy medical textbook, looking up the obscure and the malignant, we can open up a Pathography and step into our patients’ lives. No matter what our role, whether it’s inside healthcare or not, the voice of illness speaks in everyone’s ear and it deserves to be heard.

Further Reading

Illness as a Metaphor, AIDS as a Metaphor by Susan Sontag
An Unquiet Mind by Kay Redfield Jamison
C: Because Cowards Get Cancer by John Diamond
Intoxicated by My Illness by Anatole Broyard

References
1. American Association for Marriage and Family Therapy. 2014. Chronic Illness [Online]. Available at: https://www.aamft.org/iMIS15/AAMFT/Content/consumer_updates/chronic_illness.aspx [Accessed: 28th October 2014]
2. Briggs, E. 2008. Cultural perspectives on pain management. Journal of Perioperative Practice. 18:468-471
3. Wedel, J. 2009. Bridging the Gap between Western and Indigenous Medicine in Eastern Nicaragua. Anthropological Notebooks. 15:49-64

Featured image:
 Speak no evil, hear no evil… by Personal Kaleidoscope