My life with HIV

By Jennifer Boyce

If you asked me what the greatest challenge of my life with HIV has been, I would say “fear”.

Initially my diagnosis was marked by the fear of dying, fear of the unknown, of rejection and anger from family and friends, fear of the future of my children and fear of the stigma that I would bring upon myself and those I loved.

It took me a long time to come to terms with reality. I surrounded myself with work, especially work that helped me feel better about myself. So I quietly threw all my energy and efforts into the HIV/Aids programme I was coordinating in the diocese of Mariannhill—until the day my body could not take it anymore. I collapsed, and was rushed to hospital.

It was during this experience that I had to face the world as someone who is HIV-positive. My family and friends gave me unconditional support. And so began my journey in living with an incurable virus every day.

Living openly with HIV presents opportunities as well as challenges. One of the biggest opportunities for me was access to anti-retroviral treatment, which has prolonged my life. However, this came at a price. I had to experience the fears of those around me and face the reality that not all would give me the unconditional support to face my life as a person with HIV.

My first challenge was having to watch my situation being used as a cautionary note to others, regardless of the embarrassment this caused my family. My crisis was announced publicly at my church, which was a breach of my right to privacy. Many years later, my family continues to be a source of strength and support.

Many of us who found ourselves in the situation we were in years ago are appalled by the lack of evolvement in consciousness of HIV/Aids, evident by the language still being used to refer to it and the attitude.

One could say I’ve developed a certain radar for Aids-speak: “My sister has got that sickness”; “Please, can you counsel my child, because she will not accept this thing”. These simply reflect the reality of many people still finding it difficult to accept HIV as a reality of life, or those infected with it without discrimination and prejudice.

For those of us who view the situation from the opposite end, we remain ambassadors for change as we continue to soldier on in the fight for an Aids-free generation. This is where I find my strength to accept what I cannot change with wisdom and courage, and through my own life experience to change what I can.

In 2000, I spent ten days in hospital with tuberculosis and pneumonia (PCP), the most common opportunistic infection in people with HIV (sometimes called pneumocystis), which almost cost me my life. I was severely immuno-compromised and had not much chance of survival. Some considered my subsequent recovery miraculous. Thank heavens for family and friends at the time, who nursed me back to life and health after I’d been sent home to die. It would be two more years before I’d start ARV therapy.

My treatment began in March 2002, and I can justifiably say I have enjoyed excellent quality of life in the last six years. Having treatment was a decision I did not think twice about, despite the fear of the drugs’ toxicity.

After starting treatment I experienced more opportunistic infections, including shingles. I was afraid to die and I wanted the chance to prolong my life, at least to see my children through school.

After six weeks the results were phenomenal. I was regaining my strength, my vitality and my appetite returned to normal. My skin was clear and my natural body weight returned. I have never looked back. During this time I have had major surgery to remove a lobe of my lung damaged by tuberculosis. I recovered from the surgery in six weeks.

Antiretroviral drugs have indeed extended my life. But I remain an infected person, one who lives a quality life. It is also really important for me to remain diligent about taking my medication as the regimen requires strict adherence. Again my family plays an important role in supporting me by making me keep to my drug schedule and doctors’ appointments.

Friends continue to give me the courage and hope that I need to stay focused in my journey to live a long life with HIV. I still have special needs like healthy nutritious food and lots of rest.

Each time I am faced with the death of someone I know, I am moved to reflect on why God has allowed me to survive and continue to live a full life despite having HIV. I believe deeply that my experience with HIV has enabled me to appreciate the good things, the simple things. The joy of being able to wake each morning and greet the day is something I appreciate so much. So is watching the sun rise and hearing the birds sing. My work in the community gives me strength to begin each day with renewed hope and love for life.

I have much to appreciate about this life, a life with HIV. I have seen some of my biggest dreams fulfilled. My dream to build a house for my children was realised two years ago. My daughter is about to graduate from university. My sons are doing well at work and at school. I have spent the last four years loving my beautiful grandson.

God gave me the chance to nurse my mother during an illness last year. This year I travelled to Washington, DC and visited the US Senate and Congress as well as the White House. During this experience I was able to use my own life experience to lobby support for continued treatment for people with HIV in Africa.

I am constantly aware of the blessing I have in being one of the people who will live to tell the story of my life with HIV.

Jennifer Boyce lives in Mariannridge in the diocese of Mariannhill. A mother of three and grandmother, she works for a community-based development programme, and for 12 years has been involved in the HIV/Aids programme that falls under the diocese’s Home and Family Life Foundation. She also serves as chair of the archdiocese of Durban’s Archdiocesan Aids Committee.