Access Works Both Ways

This World AIDS Day, I look back at how things have changed over the seven other World AIDS Days I have experienced. Both for me personally, and in some ways for my immediate and extended community.

I remember how 7 years ago, and 10 weeks pregnant, the doctor had a difficult time telling me the results of the compulsory HIV test. How he had made it seem like it was a death sentence with the way he held his hands to his head and hung his head low as I walked in. The open case file on his desk that screamed HIV positive from the door because they were written in large, red letters. How he encouraged me to stay with his clinic to avoid the stress of going to a public health centre for treatment, but conveniently failed to mention that he would be charging exorbitantly for the wrong drugs in the wrong dosage.

In many ways, he was just reflecting society. People thought HIV was a plague, a dreaded, disgraceful illness. Or an opportunity to be exploited. It did not help that treatment was scarce, and that there were very few people representative of the idea that one could live with HIV. Two people I know died of AIDS, mainly out of shame and a consequent reluctance to seek help. The women I met at the treatment centre, my age and older, were mostly afraid and in hiding. On a certain day, one woman ran into the matron’s office where I was, because she had seen her late husband’s uncle come into the clinic, and if he saw her he would accuse her of being the cause of her husband’s death. It did not matter that he too was coming for treatment. Another nursing mother with a 5-month-old baby confided in me how she had not disclosed her status to her husband, even though she knew during pregnancy. She said she meant to tell him that evening. I never saw her at the clinic again. Health professionals discriminated against People Living With HIV and AIDS(PLWHAs). One gynaecologist sent me away saying he did not handle childbirth of ‘those people’ in his hospital. Another doctor, who I went to consult for private treatment, praised me for being so ‘honest’. As I was trying to make sense of that compliment he tried to kiss me.

Looking into the journal I kept at that time I realised how scared I was for the health of my child and how little I knew about the illness. How I resisted going for treatment for several years because of shame. Not just shame of being seen and being ridiculed by people who knew my career antecedents, but shame at how PLWHAs were treated even at the HIV clinics. Like useless, senseless donkeys. Other than my mother, I never told anyone else in my family was always too afraid to.

But I have since realised that shame is such a useless emotion. In the words of Brenee Brown, “shame keeps us from telling our own stories and prevents us from listening to others tell their stories”.

Things are so different right now.

I overcame shame in stages. Distinct stages. The first stage was when after a desperate online cry for help to an NGO, I was directed to an organisation that offered private treatment for PLWHAs, especially people in homosexual relationships. I was not in that category, but I attended the clinic for the sanity it offered. Instead of sitting for more than 4 hours in the heat and rain, exposed to every passer-by, here I sat in a very clean air-conditioned office in a nice neighbourhood. Instead of speaking to doctors who never raised their heads to look at you, who called you by the number on your file, and had no interest in you as a person, I sat with a doctor for more than 30 minutes who patiently listened as I filled in the gaps to my medical history. And instead of perfunctory, dismissive basic treatment, I received personal care. This was my first stage. I felt like a person; dignified.

I was such an exemplary model of recovery that I was featured in the NGO’s monthly newsletter. I felt so rejuvenated that I became bold enough to put myself forward for a job I ordinarily would have felt I was unqualified for. And I got it.

A few months, and several tests later, to determine my immunity level, it was decided that I should begin a course of Antiretroviral drugs (ARVs). Curiously enough, this formed the basis for the second stage of my overcoming of shame. Due to the potency of ARVs, there is a lengthy period of counselling before the drugs are dispensed, so that patients can understand the health and psychological implications of (non)adherence to the regimen. And once one begins taking the drugs there is close observation because of the many possible side effects that usually occur. In my case, however, there were no side effects. Not even the usual headaches, or dizziness or anything. My healthcare providers were ecstatic. This was when it dawned on me that what I had been hiding, and hiding from, was a mere illness. Not something to be ashamed of when you thought about it. So, the next day, in our office bathroom, as we were powdering our noses, I told two of my colleagues. Naturally they were surprised, especially because I do not in any way fit the mould of a sick person. It felt so liberating that I was confident enough to drop my status in other casual conversation. One such conversation led to a romantic relationship…

If I am to be objective however, other than my attitude, nothing much has changed in Nigeria, to be honest. People still flood the government health centres for treatment, waiting for several hours. Yet less than 10% of them receive it. Inequality and gender issues still impede the prevention of, and access to treatment, of HIV/ AIDS. Due in part to recession, and in part to socio-cultural paradigms, transactional sex is a major source of income for young people, especially girls. It is no wonder that the age range of PLWHA is becoming younger. Girls aged 15-24 make up 64% of young people living with HIV in Nigeria! And people living with HIV and AIDS are still treated as outcasts. The effects of all this is that adults and children continue to be infected, PLWHAs continue to hide, the problem continues to fester. In the news today, Lagos state recorded 9,579 fresh cases of HIV infection in 6 months! That is over new 1500 infections per month.

The renewed zest for life which I gained due, to proper treatment and a source of income, is what I wish on every PLWHA. I also wish that young people, especially women, understand sexual and reproductive health, and reduce their sexual risk. Unfortunately, it can only remain a wish if we do not do something concrete about it.

In May, this year, I went to India for an 8-month course that trains social visionaries in creating their social venture. My dream is of a world where issues around HIV become mainstream conversations. And, because HIV is out in the open, adults will not fear it, and babies will no longer be born with this disease. In a country where there are an estimated 200 000 babies born with HIV every year, this is a big dream. But we can do it if we stop hiding, stop allowing ourselves to be hidden, and deconstruct the situations that make us hide. Access Equity Rights Now.