Have you ever been unable to share something even with your closest friend or family, for fear of being judged, rejected, and ostracised? Have you ever had to carry a secret that felt so heavy you were afraid to tell your best friend? Your mother? Your partner?
Although many of us have had to face hardships big and small throughout our lives, including illness, bereavement and loss, most of us have had the opportunity to ‘half the burden’ by calling on the support of close friends and family. Unfortunately, stigma and misconceptions about HIV are alive and thriving, and many of Body & Soul’s members have had to face exceptionally bad reactions when they shared their status with loved ones. Upon revealing that they are living with HIV, many have faced breakdown of their relationships, stinging gossip from their social circles, rejection from their places of worship, and ostracisation from their communities.
Not surprisingly, then, during last Tuesday’s workshop on Talking to Others about HIV, the immediate reactions that members reported feeling upon hearing the word “disclosure” were anxiety, dread, and fear of rejection.
The stigma and isolation HIV imposes on people is, I would argue, one if its most lethal weapons – for fear of sharing their status, many of our members struggle with hopelessness, depression, debilitating side effects, complicated treatment regimens, poverty, and fears about the future completely on their own. This traps them in a vicious cycle, cutting them off from vital resources and emotional support that all of us depend on to deal with life’s ups and downs.
The workshop last Tuesday gave our members an opportunity to share experiences, both positive and negative, in a safe and supportive environment, and explore bigger questions about what makes talking to others about HIV easier. Members agreed that there was no ‘roadmap’ to follow when talking to someone for the first time about one’s HIV status, and that it completely depends on one’s own circumstances and levels of acceptance as well as those of the individual they are speaking to. Confidence and self-acceptance, knowing your rights, and having good knowledge about HIV were all cited as empowering factors that make the first conversation (and all subsequent ones) just that much easier.
Ultimately, though, the discussion turned to how to create a society that does not judge someone based on a little virus that lives in their blood. Misconceptions are rife, and people living with HIV are constantly having to face a hostile media, tabloid stories of persecution of HIV+ individuals, and a generally ignorant populace that is not armed with the information to distinguish between fact and hysteria.
How, as people living with HIV, advocates, and organisations, can we stimulate societal change on this level?
How do we create a world more accepting and supportive of people living with HIV, so that the act of sharing with a partner that we are HIV positive can elicit the same warmth, support and concern as when sharing any other chronic illness?