HIV/AIDS

Testing positive for HIV is more than a diagnosis – it is the assumption of a new identity. Unlike other illnesses, HIV is spoken of as a state of being: people use the language of "I am HIV+ or HIV-" in a way that is not true, for example, with a diagnosis of cancer.

This change in one’s very identity is profound, leads to anxiety and confusion, and forces the question: "Who am I?" The struggle to find an answer to this question occurs within the context of a disease that is stigmatised, infectious and generally considered to be terminal. The stigma of HIV disease occurs because of assumptions about behaviours that are generally considered to be deviant: anal intercourse, prostitution and/or injection drug use. Consequently, support for living with an HIV+ diagnosis is not guaranteed in the way it may be assumed for cancer. The anxiety about transmission may also cause those who could normally be relied upon to act as social supports to be uncomfortable, or to out rightly reject the person living with HIV.

In the uncertainty of the diagnosis, and what the new identity means, individuals often disclose their status to those closest to them in an attempt to "get a handle" on what it means. Unfortunately, the responses from significant others may not be supportive, ranging from discomfort to blame and rejection. The person with HIV is then in danger of internalising the stigma as shame and spiraling into a pit of low self worth.

The profound questions forced by a diagnosis of HIV disease – "Who am I now?" "Am I going to die?" "What does this mean for me?" "How can I continue to be sexual?" "How can I tell my significant others?" "How will my social relationships change?" can feel like an endless repetitive loop in the brain. Seeking support, when ready, is the best way to take charge of, and not be victimised by the situation.

Many people living with HIV and AIDS describe their experience as an "emotional roller-coaster". The sense of identity shifts again if one decides to start on medication, if one develops an opportunistic infection, if one receives an AIDS diagnosis.

Each person who receives a positive diagnosis exists within a web of social networks. Not only are these relationships disrupted by the identity shift to "PHA" (person living with HIV/AIDS), those close to the person are profoundly affected by the news. What does it mean for me if my partner/child/friend is now HIV+? How does this impact on me? How is it that I am HIV- if I engaged in the same behaviours? How can I continue to support him/her and have my own reactions? What do I say? Where can I go for support? Recent medical advances bring cautious hope to the treatment of HIV disease. The drug regimens, however, are highly demanding, often come with almost intolerable side effects, and serve as a constant daily reminder of HIV status as one’s routine is disrupted to accommodate taking medications at specific times. This way of living with HIV is extremely demanding and can easily wear down a person – "drug vacations", although risking developing resistance to the medications, are becoming increasingly more common. Decisions about treatment are extremely complex and a knowledgeable supportive physician is an essential partner in the decision making process.

Psychologically, the investment of hope in drug treatments, with the possibility that "I may not die" is a profoundly challenging adjustment to make; especially for someone who had made peace with a terminal diagnosis. What does it mean to now consider living? If my friends are also infected and not doing well on the medications, or are intolerant to them, what does that mean for our social dynamics? How can I look them in the eye? If this disease is not going to kill me, do I even need to tell anyone I have it? What is the cost of my silence?

A diagnosis of HIV disease is life altering and requires support and information.

Recommended resources are:

The AIDS Committee of Toronto, 399 Church St. (416) 340-2437 www.actoronto.org

The AIDS Committee of London, (519) 434 1601;

The Ministry of Health Sexual Health Infoline (416) 392-2437 or 1-800-668-2437

For treatment information call CATIE (The Canadian AIDS Treatment Information Exchange) www.catie.ca (416) 944-1916 or 1-800-263-1638