What’s in a Name?

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Aksha Ramaesh, third year, investigates the concept of labelling patients.

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“Fear of a name increases fear of the thing itself.” Albus Percival Wulfric Brian Dumbledore

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 There is no power in a name.

While this may have been true in the Wizarding World circa 1997, it is now a sadly misinformed statement; we are reliant on labels and names to define who and where we are in relation to our surroundings and those around us. Labelling is a practice that allows us to organise and compartmentalise our environment into manageable portions, but also one that forces certain stereotypes onto people. It can ostracise, punish, and blame, or it can precipitate recovery and open the doors to frank, candid discussions on otherwise stigmatised topics.

HIV/ AIDS

With 1 in 20 adults living with HIV, Sub-Saharan Africa lies at the centre of the worldwide HIV/AIDS epidemic [1]. In such areas, severe social stigma has resulted in HIV becoming both a medical problem and a social taboo [2], complicating treatment and future prevention of the disease. Women associated with the disease are often rejected from their families and risk exposing themselves to social isolation and physical violence.

“Discrimination arises out of any point of difference that can be consistently labelled; for example physical deformity or disfigurement, racial differences or any other factors that set up the person as different to the perceived norm [3].” The “perceived norm” in this case is heterosexuality, and with a homophobic culture that continues to prevail throughout certain parts of South Africa [4], homosexual men are further stigmatised by their association with the spread of HIV/AIDS. With the most authoritative figures in the community dictating what is ‘normal’, homosexual men are considered to have “violated certain social norms” and as such, are responsible for their disease. An admission of homosexuality carries with it a high risk of physical violence and ostracism from homes and communities. For unaffected individuals, this ability to blame others for the disease can often be a comforting pedestal to stand upon; those who contracted HIV exhibited ‘unnatural’ behaviours and rightly deserved their diagnosis, and a strict adherence to the rules will ensure avoidance of this fate.

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I would like to digress slightly here, and offer an official definition for the word ‘label’ from that oh-so-mighty font of knowledge, Urban Dictionary: “Something you put on jars. Not on people.” Placed in the context of the HIV/AIDS issue, it appears to be a ridiculous statement; it is in fact hugely relevant to the situation. In assigning people with a label, we are stripping them of their power and, crucially, their sense of identity. Personality, likes, and dislikes are dismantled to leave an illness as their sole defining feature. To avoid this inevitable condemnation, many choose not to undergo testing for HIV/AIDS; others who receive a positive diagnosis refuse to inform their family for fear of the consequences. Further, the level of discrimination in some areas is still such that the use of condoms implicates a guilty verdict for one or other of the parties involved [5]. The effect of all of this subterfuge is a reduced perceived threat of HIV/AIDS infection, despite overwhelming statistical information from the World Health Organisation to the contrary.

Changing a nation’s perception on such an issue is a monumental task. It is one that Medecins Sans Frontiers (MSF) has been working on for many years and will continue to do so in order to bring the epidemic to a close.

Alcoholism/ Drug Addiction

With reference to the stigma associated with it, the issue of drug addiction is comparable in many ways to HIV/AIDS. Once again, the existence of a blame-culture often leads to alcohol-dependent patients becoming the victims of abuse and social exclusion; perhaps part of this societal view on alcoholism is a difficulty in viewing dependency syndromes as a state of mental illness [6]. On the face of it, it is easy to understand why; the stereotype of violent unpredictability associated with drug dependence runs deep and does not inspire sympathy from onlookers. This general opinion is in spite of decades of research showing that drug addiction is in fact a result of pathological changes in brain function [7] and the severity of the withdrawal symptoms leaves many sufferers entirely dependent on alcohol.

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Alcohol consumption has widespread effects on the human body; it is a major central nervous system depressant, cutaneous vasodilator, increases gastric secretions and causes fatty accumulation in the liver. It acts to interact with the mesolimbic pathway to produce “addictive and rewarding effects [8]”. Dopamine is released from these pathways, causing the short-term pleasurable effects of these drugs; in the long term, chronic dopamine stimulation causes a level to tolerance to develop so the patient requires a higher dosage to elicit the same effect, causing more damage to the dopamine pathway, and so the vicious circle continues.

The following is an anonymised summarised case study from a patient interviewed on placement:

70 year-old male patient with chronic liver and kidney failure following long-term alcohol abuse. Admitted to Vic with accidental Paracetamol overdose, presented with haematuria (visible blood in urine) on admission. Endoscopy confirmed Barrett’s oesophagus. Recommended abstinence from alcohol and salt in diet on discharge from hospital. Organ transplant committee reviewed case, but decided against placing patient on transplant list due to history of alcohol abuse.

Interestingly, the patient was happy to speak specifically about his alcohol intake, but at no point referred to himself as an “alcoholic”. Denial can occur on several levels; on one, the patient may not believe the doctor’s diagnosis, or they may not be willing to admit themselves that they have succumbed to what they consider to be personal weakness. Similarly to the HIV/AIDS situation, the threat of social exclusion is a powerful deterrent in preventing alcohol-dependent patients from asking for help. Crucially however, after passing this initial barrier of defining their illness, many support networks exist in which they can begin to precipitate their recovery in a safe, anonymous and sheltered environment.

“We admitted we were powerless over alcohol- that our lives had become unmanageable [9].” This was the first of twelve steps documented in 1935 when Alcoholic Anonymous was founded and remains the foundation of the network to this day. Support and self-help groups such as Alcoholics Anonymous work towards a long-term goal of total abstinence via a pre-approved twelve-step treatment programme [10] as they see this as the only way to arrest what is otherwise considered to be a progressive and debilitating disease. In this scenario, recognition of their symptoms and their illness is essential to help recovering alcoholics make the first step. Unlike HIV/AIDS where the treatment is primarily pharmacological, counselling therapies for addiction syndromes require a huge amount of patient focus and drive, which in turn demands full acceptance and commitment. People cannot be forced into discussing these issues but in understanding and labelling the core problem, they can begin to move towards a fresh start.

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Psychosomatic Conditions

As medical students, we are taught that our primary objective when we see a patient is to establish a diagnosis. From the history arises a differential diagnosis, which is generally confirmed on examination and investigation, from where treatment plans and follow-up checks can be organised [11]. It is a structure that we are comfortable with and allows us to compartmentalise patients, to a certain extent, into neat files that can be consulted as required when the time comes. Psychosomatic conditions however, are not so clear-cut; emotional and psychological factors such as stress can impact on the patient’s symptoms and aggravate them to a debilitating degree. Irritable Bowel Syndrome (IBS) is a prime example of such a condition; sufferers experience abdominal pain and cramping, changes in bowel habits and an urgent, sudden need to pass urine.

“It’s all in your head.” With hundreds of resources now available online, patients will often research the diagnosis and come to the conclusion that they are being ridiculed, or that the doctor has issued them with the label of IBS to humour their claims of abdominal symptoms. Cooperation with treatment plans therefore hinges on a very stable patient-doctor relationship and the understanding that the doctor respects that their description of the symptoms is true and accurate. Treatment for IBS is usually based around sessions of cognitive behavioural therapy, which in itself is often met with barriers; there is widespread resistance to the use of such therapies as many patients equate psychotherapy to imaginary or non-existent conditions. The core of the cognitive model of treatment is the concept that “an individual’s reaction to an event is determined not by the event itself, but how the event is perceived [12]”; for example, a patient comes in complaining of vomiting and is found to have food poisoning. They are treated with antibiotics and fluids and from thereon avoid the offending food and do not experience their symptoms again. When the cause of the vomiting is less tangible or substantial (for example, stress or negative emotions), it is harder to express avoidance behaviours, the stress of a relapse causes another vomiting episode, which in turn attenuates their distress and so the vicious circle continues.

Hyperbole and Flippant Use of Clinical Terms

“Oh, I’m really OCD about the house being clean…”

“ Yeah, remember that time he went completely schitzo over that…”

I will admit to counting myself among those who are guilty of this in our day-to-day lives. It has become such a cliché that often it goes by unnoticed, a useful adjective for when another won’t do. Despite an increasing awareness and understanding of their seriousness and impact on sufferers, mental illnesses are still trivialised in the media: for example, in 2011 an unsettled global economy was described as being “bipolar [13].” In addition to further stigmatising these conditions, flippant use of these terms often redefines what is understood about them: in this example, bipolar disorder is a hugely complex condition that is simplified to a few rises and falls in someone’s mood over a period of time. With this analogy in mind, sensitivity about this topic is easily understandable: in using these clinical terms frivolously, we devalue the label of mental illness and consequently devalue those who battle with these conditions every day behind closed doors.

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“All publicity is good publicity.” Bryony Gordon, a columnist for the Daily Telegraph, has suffered from Obsessive Compulsive Disorder for nearly twenty years and takes a different view on the situation [14]. She sees social use of such terms as a “vehicle [for people] to talk about it, within reason.” Ten years ago, OCD was an alien term and a completely unknown condition whereas now most people will have, at the least, a general sense of what it entails and how it can affect lives.

What Can We Do?

The effects of labelling are diverse and multitudinous, and its practice has as many advantages as it has disadvantages. When applied correctly, it allows for an understanding of the foundations of an addiction or psychosomatic disorder and can thus launch the process of recovery. Used incorrectly, it stigmatises individuals who are already battling with illness and alienates them from those who have the power to help them.

A huge part of addressing this issue is increasing recognition, in both its erroneous and correct forms. A lack of awareness up until now has led to it gaining a harmful reputation in general society as well as within the medical profession. Recent advances in research have increased the prominence of psychosomatic and mental disorders and ideally, this increased knowledge will serve to decrease the effects of misplaced labelling and allow a more holistic and effective approach to medicine.

With thanks to Dr Anita Laidlaw

REFERENCES

1) HIV/AIDS; World Health Organisation; Published 2014, Accessed 28/09/14 http://www.who.int/gho/hiv/en/

2) Mawar N, Sahay S et al. The Third Phase of HIV pandemic; Social Consequences of HIV stigma and discrimination, and future needs. Indian Journal of Medical Research [Online] 2005 122:pp471-484 [Accessed 28 Sept 2014]

3) Skinner D, Mfecane S. Stigma, Discrimination and the implication for people living with HIV/AIDS in South Africa. Journal of Social Aspects of HIV/AIDS 2004 1:3 pp157-163

4) ‘Amnesty International condemns homophobia in South Africa’ Published June 2013, Accessed 29/09/14 http://www.bbc.co.uk/news/world-africa-23033423

5) Link B, Phelan, J. On stigma and its Public Health Implication. New York State Psychiatric Institute  http://www.stigmaconference.nih.gov/LinkPaper.htm (Accessed 29/09/14)

6) Schomerus G, Lucht M, Holzinger A et al. The Stigma of Alcohol Dependence Compared with Other Mental Disorders: A Review of Population Studies. Alcohol and Alcoholism Vol 46 pp105-112. 2011

7) Adinoff B., Neurobiologic Processes in Drug Reward and Addiction Harvard Review of Psychiatry 12 (6) pp305-320. 2004

8) Mesolimbic Dopamine System; Alcohol Rehabilitation; Published 2014, Accessed 07/10/14 http://alcoholrehab.com/addiction-articles/mesolimbic-dopamine-system/

9) Humphreys K, Alcoholics Anonymous and 12-step alcoholism treatment programmes Recent developments in Alcoholism. Vol 16 pp149 (2003)

10) The Twelve Steps of Alcoholics Anonymous Alcoholics Anonymous Great Britain (2014) Accessed 04/11/14 http://www.alcoholics-anonymous.org.uk/About-AA/The-12-Steps-of-AA

11) Bedson J, McCarney R et al. Labelling Chronic Illness in Primary Care; Good or Bad? British Journal of General Practice (2004) Vol 54 pp932-938

12) Bothwell R, Cognitive Behaviour Therapy for Psychosomatic Disorders Continuing Medical Education (2003) Vol 21 pp 145

13) Kelly J, Winterman D, OCD, Bipolar, Schizophrenic and the Misuse of Mental Health Terms BBC News (2011) http://www.bbc.co.uk/news/magazine-15213824 [Accessed November 2014]

14) Gordon B, I’d Like to Come Clean about OCD Daily Telegraph (2014) http://www.telegraph.co.uk/comment/columnists/bryonygordon/8309311/Id-like-to-come-clean-about-OCD.html [Accessed November 2014]

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