Aren’t We All A Bit Nuts?
According the World Health Organization “studies have demonstrated a high sero-prevalence of HIV infection in people with serious chronic mental illnesses. Prevalence rates in mentally ill inpatients and outpatients have been reported to be between 5% and 23%, compared with a range of 0.3% to 0.4% in the general population in the United States of America over comparable time periods.” (WHO. 2008)
I am not disputing these findings entirely, but rather am considering what impact these findings will have on the HIV community. What direction are these findings headed in other than increased support and services for people who have mental illnesses and most definitely an additional stigmatic label which will not be beneficial to our community in any way. The HIV community must be cautious and continually probe and analyze how the findings relating HIV to mental illness are interpreted and implemented as they maybe have consequences that will impede our quality of life and further complicate our daily struggles. As members of the HIV community we must ensure active participation in guiding the results of mental health studies and their relation to HIV.
There is a segment of the HIV community that no doubt does suffer from mental illness and I have at times asked myself if some, not all, of these individuals had mental health issues prior to their diagnosis or if studies are going to be available explaining how progression of the HIV virus may indeed be directly linked to the onset of mental health problems in people who otherwise would not have been predisposed to such a diagnosis. Indeed aids.gov raises this question as they explain “a mental health disorder may be a pre-existing condition that already was a problem for a person before they had HIV; it may be first seen after an HIV diagnosis; or it may be directly or indirectly caused by the progression of the disease.” (aids.gov 2014)
I have also considered what the impact is on the daily stresses of people living with HIV. This includes worries about physical health, stigma and discrimination which appears in many ways to be worse than ever if we consider rates of criminalization, lack of intimacy, isolation, financial concerns, maintaining or finding employment, side effects of potent medications and life itself with challenges and uncertainties it poses. Being part of a marginalized group exacerbates stress and will eventually take a toll in one form or another. Carter and Hughson in Nam AIDS Map maintain “it could be because the groups most affected by HIV in the UK – gay men, refugees, migrants and drug users – are already more likely to have mental health problems because of the added pressures they can live with.” (2012)
This explanation seems most plausible to me as mental illness is just too complex. Putting a medical label on an individual as a means of categorizing is something that we lean towards, and we tend to do it when we simply do not know what else to do or offer people who have been traumatized or are suffering. We may think that at least labeling it will ease the stress, or as Maggie explains “The use of psychiatric words to describe suffering – implies that PTSD is universal and context-independent. This medicalization of suffering infers all suffering is pathological, an illness or disease, and must be treated within a medical model”. (2011) Is all suffering considered a pathology of sorts or an illness and is there a need to treat it regardless of circumstances? How do people living with HIV who do not suffer from mental illness fit in to this need for categorization? I am referring to the segment of the HIV population that functions well, contributes on every level to the community and is not diagnosed with any mental illness as outlined in the DSM-1V manual. I ask these questions partly from my own personal experiences. When I was diagnosed with HIV one of the first things offered to me was anti-depressants. I declined the offer and was somewhat surprised how on this occasion and on several others I was offered anti depressants. It was explained how I needed them to manage and cope with adjusting to life with HIV. I, on the other hand viewed it as a temporary shock to my system that I needed to incorporate into my daily life as best I could and medication was not how I chose to approach it. I was left feeling that the medical professionals offering the anti depressant medication were doing so as they felt somewhat helpless and viewed this as their way of offering support and assistance. I also felt that I was now in some sort of new category of people who needed to be medicated to cope with the illness, when I viewed my reactions to the traumatic news as being normal.
In a symposium at Harvard University Humanities Center on medicalization on April 22, 2009, a group of scholars argued that the phenomenon of medicalization permeates almost every facet of our modern lives and is driven by societal forces, including health insurance where costs are reimbursed only when associated with a definable medical condition, death certificates and the need to give a name to cause of death, research funding which is more likely to be granted for diseases that can be defined, along with drug trials and approval. Monrad professor of the social sciences Charles Rosenberg reminded the audience of how “we remain stubbornly human and flawed and health and illness cannot be reduced to morally neutral terms. We are commended for fighting cancer, for mastering impulse, for adhering to medical discipline. We can also blame ourselves and judge others for actions that seem, in retrospect, to have invited sickness.In the West’s bureaucratic and technology-dependent environment, it is ironic that, in some ways, pain, sickness, and incapacity remain a final and ultimately inaccessible citadel of human idiosyncrasy. We are shaped by our diagnoses. We are not reduced to them.” (Harvard Magazine September/October 2009)
Indeed people who “beat cancer” are commended, supported and congratulated as they are viewed somewhat differently from those of us who contracted HIV. If I were to tell people I suffered from cancer, rather than HIV, I do think there would be more support, less isolation and definitely more acceptable services and spaces for me and all other people living with HIV to gather as a community. If I mentioned my viral load was undetectable I would not get congratulated with words of encouragement from the general public. For the most part the general public is not entirely aware of what this implies. Some of the general public are, in which case congratulations will not be an instinctive reaction.
I continue to volunteer for many research studies in the name of scientific advancement and I value scientific research as we desperately pursue a cure for the HIV virus. Indeed it is scientific evidence which will move the HIV community forward in the decriminalization of HIV. However the following questions and concerns are what comes to mind to be cautious and mindful of when mental illness and HIV are discussed:
Are questions on research questionnaires structured in such a way to obtain pre determined answers? Have the researchers decided in advance that the person filing out the questionnaire has a diagnosis of mental illness?
Is including mental illness as a given with HIV not adding to stress, stigma, isolation and perhaps the development of mental illness that may not have otherwise been present?
Mental health is often associated with deviant behavior. Will this further stigmatize us or help our cause?
Those of us who do not suffer from mental illness must ensure that we care for, speak for and include those individuals who, for whatever reason, cannot organize themselves towards constructive change in attitudes and public perceptions about people living with HIV.
We need to continue to challenge and critique research studies that link HIV and mental illness together.
Is it possible that some individuals are simply tired physically, emotionally and mentally and in turn being given a label of mental illness inadvertently? This could be described as a situation where the mind is often quite willing to engage but our bodies are not due to fatigue.
Should we be asking why there is a focus on mental health issues and HIV which coincides with new scientific evidence about HIV transmission risks? New scientific evidence about how people living with HIV and on treatment are in fact not able to transmit the virus should be the focus for celebration and hope.
If we accept this label too readily it will again shift attention away from the causes of some mental health issues and back onto to the HIV community as another health related issue to manage, all the while letting the public off the hook for initiating any change in their perceptions and responsibilities towards people living with HIV.
I would argue that often times mental health issues are caused by external factors, the most deeply embed ones being stigma, discrimination and outdated perceptions of people living with HIV and transmission risk.
If all of us long term survivors are destined to lose our marbles, all the more reason to ensure the next generation is equipped to carry on the cause. From what I have seen and experienced I would say with ease that we are in good hands with an intelligent, skilled, experienced, wise and compassionate younger generation of people living with HIV.
There needs to be a focus on living relatively normal lives with mental illness. This is the approach for the general public in accepting mental illness and changing public perceptions. But mental illness within the HIV community is received as being complex and problematic.
There needs to be a focus on strengths and accomplishments of people living with mental illness and HIV.
In response to a concern from a 25 year old man who expressed his feelings of hopelessness about his prognosis with HIV and mental health in a question to The Body.com, we must ensure that hope and as Dr. Fawcett emphasized, healthy living is encouraged.
Most relevant and important to people living with HIV, when is there going to be a research study in place helping the HIV community find a way to have satisfactory sex lives? I must admit, this just may get me a bit more enthused about life in general as a person living with HIV.
aids.gov Mental Health HIV Last revised: (03/07/2014) http://aids.gov/hiv-aids-basics/staying-healthy-with-hiv-aids/taking-care-of-yourself/mental-health/
Carter, Michael. Hughson, Greta. 2012. NAM AIDS Map Fact Sheet http://www.aidsmap.com/Mental-health/page/1044702/ ENG.pdf
On the Medicalization of Our Culture/Harvard Magazine September/October 2009 4.23.09 http://harvardmagazine.com/2009/04/medicalization-of-our-culture
The Body.com http://www.thebody.com/Forums/AIDS/Mental/Q236840.html?ic=700101
WHO. 2008. HIV/AIDS and mental health: Report by the secretariat p.1,2) http://apps.who.int/gb/ebwha/pdf_files/EB124/B124_6-en.pdf