My Life as an HIV Positive Woman

I have been living with HIV/AIDS for the past 13 years. Back then I certainly did not - could not envision living with the disease this long. The fact is I thought I would have been dead already. I guess I have been one of the lucky ones.

My initial reaction was one of anger - the wave of fear came later. I was at home when I got a call from my fiancé’s sister, telling me that Brian (my fiancé) had collapsed and was rushed to the hospital. He spent one week there. The day after he was admitted - Monday - Brian became delirious with high fever and chills. On Wednesday, he started having uncontrollable diarrhoea and had to be put in diapers. By Friday he was comatose. He died the following Monday. I was there every day except the day that he died.

One day that week, it dawned on me that I had seen similar symptoms before. One year earlier, I had lost a friend to AIDS. After leaving the hospital that day, I went to a counselling and testing centre nearby and had an HIV test. I got my results two weeks after Brian’s funeral. I had tested positive.

I went home dazed. Shortly after that, I quit my job, sold or gave away most of my possessions and literally waited to die. After three months, I realised that nothing was happening to me except that I was running out of money. I decided that instead of waiting to die, I would find out more about HIV/AIDS. The knowledge, wisdom and understanding of a clinical psychologist, who subsequently became my counsellor, colleague and good friend, have seen me through my passage with HIV.

Voluntary work for the local AIDS Hotline lead to contracts with regional agencies involved with HIV prevention and overseas trips. I attended my first international meeting in 1992 and became a founding member of the International Community of Women Living with HIV/AIDS. This led to an affiliation with the Global Network of People Living with HIV/AIDS. Three years later, I help to found the Caribbean Regional Network of People Living with HIV/AIDS.

Years ago I decided to turn a seemingly bad thing into something POSITIVE (no pun intended). HIV has turned out to be a blessing in disguise. I have dedicated my life to empowering and improving the quality of life for all Caribbean PLWHA. The Lord continues to bless me richly.

To disclose or not to disclose

I realised from very early that part of the problem of living with this disease was living with it in secret. Being positive and disclosing to both family and friends has only improved the quality of our relationship.

The day I received my results, I told a good friend of mine. I was later counselled that my status was nobody’s business but my own. I knew that it was up to me to decide to whom, when and how I should disclose. A core group of my friends supported me then and are very much a part of my life today.

While my family suspected that I had contracted the disease, they only found out 7½ years after my diagnosis. I did not tell them; my friend, the psychologist, did because I had developed Cryptococcal Meningitis and was in a hospital abroad fighting for my life. That was in 1995. I almost died.

When I got ill, many people found out about my status. I was worried and a little scared about how it would all turn out. My fears were quite unfounded. I had never experienced so much love from so many people all over the world. In a lot of ways, it was this outpouring of love and support coupled with a visit from my grandmother that helped me to recover.

I have been very fortunate not to have been stigmatised or discriminated against as a result of disclosing my HIV status. On the contrary, whenever I have disclosed to people they have been very warm and genuine towards me. Through disclosure, I’ve been able to access quality health care and medication, travel extensively and see the world, meet many wonderful people, help to establish a regional network for people living with HIV/AIDS, reclaim my life and find love.

The last thing on your mind
Before becoming HIV positive, I had enjoyed a reasonably healthy sex life with a normal libido. Contrary to popular belief, when you get an HIV+ result, the last thing on your mind is having sex. Despite the pain, despair and hopelessness I felt at being HIV+, I never entertained the thought of going out and "getting even" because I felt the world was to blame.

After several years of counselling and trying to find some direction in my life, I embarked on the first "real relationship" since my diagnosis. I was not really looking to start a relationship, perhaps because I thought that no one would ever truly care about me and that once they heard the word "AIDS" it would be enough to send them running in the opposite direction. How wrong I was.

I daresay that I am indeed blessed and thank God not only for life but real love. I never thought that I would find someone who would love me unconditionally in spite of my HIV status. I have had three significant relationships since my diagnosis, all with HIV negative individuals. I disclosed my status to each person within a week of our meeting.

"Why treat them if they are going to die anyway?"

There is little or no access to quality health care, medication and services in my country. After almost 20 years into the epidemic the situation has hardly changed. I can count the number of doctors who are willing to treat HIV/AIDS patients, on one hand.

Health care workers (including professionals) are the chief perpetrators when it comes to discriminating against HIV/AIDS patients and breaching confidentiality. Sadly, HIV/AIDS is still viewed as a death sentence. The general feeling is "why treat them if they are going to die anyway?"

Medication to treat opportunistic infections is limited and rarely available. Antiretroviral therapy, which is available now, cost upwards of US$ 1,000 per month. How many people can afford this? The government does not provide the drugs. Patients have to bear the cost themselves.

In my country, two medical doctors and one dentist (my other dentist is from another Caribbean country) manage my clinical care. Fortunately, I remain relatively healthy and for the most part do not require health care. If I need medication for opportunistic infections, I can afford them myself or sometimes I get them free from the doctors. The real medical management of my HIV takes place abroad. If I stayed at home when I became seriously ill in 1995, I would have surely died.

What women’s organisations can do

We women must do a better job of coming together and supporting each other. We need to begin to dialogue now. The problem is that no one wants to talk about it so we continue to suffer and die in silence. Organisations like CAFRA need to take the lead in making this dialogue a reality.

There is an urgent need to develop a supportive environment to encourage HIV positive women to access health services. Most HIV positive women are unaware of what services are available or how to access them. Perhaps a directory of services could be developed. A strong network for Caribbean women living with HIV/AIDS is needed to highlight issues such as access to better health care, education, advocacy, lobbying and legal and ethical issues.

Knowing all that I know now, my advice to uninfected women is this:

 Get the facts. HIV/AIDS does not discriminate against age, ethnicity, marital status or personal circumstance. It can happen to you.
 Don’t be afraid - be aware. Protect yourself, live your life responsibly and pray that the Lord continue to guide and direct your path.
 HIV/AIDS is out there. It is everywhere. There is still no known cure. Please be careful!

Jessica is a pseudonym for a Caribbean woman living with HIV/AIDS.