Mary Ero offers a roadmap—drawn from her own experience—to end HIV stigma and make progress in the fight against HIV/AIDS.
“It dawned on me that what I had been hiding—and hiding from—was a mere illness.”
Seven years ago, I was 10 weeks pregnant and headed to see my doctor to find out the results of the compulsory HIV test. As I walked into his office, the doctor hung his head low and held his hands to his head. He had a difficult time telling me the results, but I had already seen the open case file from the doorway. It screamed HIV positive in large, red letters.
The doctor made it seem like it was a death sentence. He encouraged me to stay with his clinic to avoid the stress of going to a public health center for treatment. I stayed, not realizing the clinic would charge me exorbitantly while giving me the wrong drugs in the wrong dosage.
The way I was treated at that clinic was a reflection of how HIV was treated in society. Back then, people thought HIV was a plague; a dreaded, disgraceful illness. Treatment was scarce, and there were very few people to look to as an example that it is possible to live with HIV.
Today is World AIDS Day. As I reflect on the changes I’ve seen over the seven years and seven World AIDS Days since I first learned my HIV status, I am aware that there is still a long way to go in Nigeria.
People continue to flood government health centers for treatment, waiting for several hours. Yet less than 20% of HIV-positive Nigerians have access to antiretroviral therapy. And people living with HIV and AIDS are still treated as outcasts. As a result, adults and children continue to become infected, people living with HIV and AIDS continue to hide, and the problem continues to fester. Just last week, I read in the news that Lagos state recorded 9,579 fresh cases of HIV infection in 6 months. That is over new 1,500 infections per month.
I know two people who died of AIDS, mainly because their shame made them reluctant to seek help. Shame also followed those of us who did seek treatment.
Most of the women I met at the treatment center were in hiding. One day, a woman ran into the matron’s office where I was because she had seen her late husband’s uncle come into the clinic. If he had seen her, he would have accused her of being the cause of her husband’s death. It did not matter that he too was coming in for treatment.
A nursing mother with a 5-month-old baby once confided in me that 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.
Even health professionals discriminated against us and contributed to the shame we experienced. One gynecologist sent me away, saying he did not handle childbirth of ‘those people’ in his hospital. Another doctor, who I consulted 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 now at the journal I kept at that time, I realize how scared I was for the health of my child and how little I knew about the illness. I resisted going for treatment for several years because of the shame. I was afraid of being seen and ridiculed by people who knew me. And I was ashamed of being treated like a useless, senseless donkey at HIV clinics. I didn’t tell anyone in my family other than my mother about my HIV status.
Since then, I have come to realize that shame is a useless emotion. In the words of Brené Brown, “Shame keeps us from telling our own stories and prevents us from listening to others tell their stories.”
I have managed to overcome the shame in three distinct stages. Today, my life is very different from when I was first diagnosed with HIV.
Stage 1: Becoming a Person Again
After a desperate online cry for help to a non-governmental organization, I was directed to an organization that offered private treatment for people living with HIV and AIDS. This organization was especially focused on people in homosexual relationships, and although I was not in that category, I attended the clinic for the sanity it offered.
Before, I would have to sit for more than 4 hours in the heat and rain, exposed to every passerby. Here I sat in a very clean air-conditioned office in a nice neighborhood.
Before, I was called by the number on my file by doctors who never raised their heads to look at me or showed interest in me as a person. Here, I sat with a doctor who patiently listened to me for more than 30 minutes as I filled in the gaps in my medical history.
Before, I received perfunctory and dismissive basic treatment. Here I received personal care. Suddenly, I felt like a person. I felt dignified.
Stage 2: Redefining My Illness
I was such an exemplary model of recovery that I was featured in the organization’s monthly newsletter. I felt so rejuvenated that I became bold enough to put myself forward for a job I ordinarily would have felt unqualified for. And I got it.
A few months, and several tests, later, my doctors determined that I should begin a course of antiretroviral drugs (ARVs). Due to the potency of ARVs, there is a lengthy period of counseling before the drugs are dispensedso that patients can understand the health and psychological implications of nonadherence to the regimen. And once one begins taking the drugs, there is close observation due to the many possible side effects that usually occur. In my case, however, there were no side effects. Not even the usual headaches and dizziness. 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. It wasn't something to be ashamed of. So, the next day, I told two of my colleagues as we were powdering our noses in the office bathroom. Naturally, they were surprised, especially because I do not in any way fit the mold of a sick person. It felt so liberating that I became confident enough to drop my status in other casual conversations.
Stage 3: Taking Action
I gained a renewed zest for life after getting proper treatment and a source of income. This is what I wish for every person who is living with HIV. I also want to see young people, especially women, understand their sexual and reproductive healthand reduce their risk. Unfortunately, this will only remain a wish if we do not do something concrete about it.
I am ready to take action. In May this year, I traveled to India for an eight-month course that trains social visionaries in creating social ventures.
The dream I am working toward is a world where issues around HIV become mainstream conversations. When HIV is out in the open, adults will not fear it, and babies will no longer be born with this disease. In my country where an estimated 60,000 babies are 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 reject the situations that make us hide.