I remember when I was first diagnosed in 1996, and I was constantly reminded about those before me of whom died from AIDS. Most often it was couched in the context of medication: "You are fortunate to have this treatment available. The people before you were not so lucky." I cannot begin to tell you how much this caused great angst and guilt in my life. It made it exceedingly difficult to talk about other equally important topics, such as the evolving meaning of lab results (CD4 count and viral load), dosing levels (men versus women), intrinsic value (labels versus life). And by "life" I am referring to things that bring intrinsic personal value and motivation for living, such as securing an education, obtaining work, cultivating a career, being involved in our communities, raising our children, having meaningful and sustainable relationships in our homes and beyond. There are places in our world where combating availability of medication is still the number one issue. Yet, in other parts of the world, there are those of us who have access to the medication and now know just how critical these other components are to the success of everyday living with HIV infection.
It is a vicious cycle. Without medication, there might be no life. With no meaning of life and regard for what construes our daily living, the medication may ring hollow. More importantly, I have observed and personally experienced over the last 25 years just how critical issues of daily living (that apply to us ALL) highly affect the efficacy of medication: nutrition, hydration, exercise, substance use, mental health, functional relationships, and safe homes. All of which are critical factors that influence our ability to adhere to our medication protocol. Further, just because we are HIV positive, it does not make us immune to other contributing life conditions that may interrupt our ability to achieve homeostasis that makes being compliant possible: domestic/intimate partner violence, stigma and discrimination for being female, women specific conditions like gynecological needs and heart disease, being the head of household.
Sometimes I feel like I am banging my head against the wall and finding my words echoing into a vacant canyon. I am in no way discarding nor minimizing the need for base level issues to be addressed. Rather, I wonder why it is our needs are not perceived akin to Maslow; basic needs are just the foundation…not the end all and be all of what it means to be fully whole, present, involved, and evolved. All of which is dire regarding the belief and actuality of possessing a holistically empowering life, not just one defined by staying alive with HIV coursing through our body. Therefore, as I appreciate what it means to learn how to disclose our status and navigate life initially with the moniker of HIV, I also challenge others to consider what it means to be a woman living with HIV in terms of personal identity, social status, and public health concerns. Inherent to this worldview begs the following question: why is it that women are still considered an addendum to the research, treatment, and care of HIV/AIDS when they now comprise more than 50 per cent of those acquiring HIV, combating chronic HIV infection, and dying from AIDS?
To this end, I wish to broaden the discussion. Inasmuch as I fear being ostracized for coming from a position that may be considered elitist (e.g., coming from a first world nation with societal constructs that make resources more readily available), it is quite the contrary. Women deserve to live beyond staying alive. They deserve full lives. I would even argue that women are more compromised and more likely to engage in at-risk behaviors that make modes of transmission more likely without placing women in this powerful paradigm of wholeness.