Abiti’s story: living with HIV and disability

Abiti speaks to our correspondent in Malawi about her struggle to live with HIV as a physically-challenged mother of three children.

Abiti lives in Manase Township in Blantyre, Malawi. She lives with HIV and is widowed by her husband. As if that’s not hard enough Abiti is disabled and needs to use a wheelchair. She spoke to Francis Chimenya about her struggle to live with HIV as a physically-challenged mother of three children:

I was diagnosed with HIV in 2008 after a couple of illnesses; that was after my husband and I had already separated. I was 37 by then, but none of my kids are infected. All of my children know about my status but we don’t really talk much about it.

It wasn’t easy to come out to them because I have always been advising my children to be careful when it comes to sex and relationships. I felt like a hypocrite.

I’m on treatment now – I started my medication soon after my diagnosis because my immune system had deteriorated. The decision to start treatment was never an easy one, because I heard all these stories about terrible side effects of HIV medication, such as people being disfigured due to the drugs. It was too much to take in, and it took me sometime to get through it. The doctor had to switch my first medication because my body was resisting them. I’m adherent to my medication now and my blood test show no signs of the disease [viral load is now undetectable].

Accessing HIV medication

It’s not easy for me to access my HIV medication because all my children go to school and I can’t push the wheelchair by myself to go to the hospital. I feel bad that for most hospital visits one of my children has to skip school to accompany me, so most of the time I don’t get my medication on time.

The side effect of my medication also drives me insane sometimes. It’s unfortunate that I only have a limited choice of HIV drugs here in Malawi. It sometimes feels lonely because there aren’t a lot of a physically challenged women with HIV like myself. But I keep fighting for my children, they need a mother and they are the source of my joy. And whenever I feel like giving up, I think of them.

It’s hard as a single mother of my condition to support my family because I’m very limited in the things I can do. I have a small business but it can’t support my utilities. Thank God, because of some well-wishers we are surviving.

Taking back control

I try to live a happy life despite the challenges. I realised I had to take back control of my life; I take my medication on time every day, follow doctors’ orders and eat healthily. I choose not to live in fear, at least not anymore. I dwell on the positives in life and I share my story with people to break down stereotypes about who gets HIV. Even though most of the times it suddenly turns into a pity party.

I just want people to be informed about their sexual health and the HIV services and treatment that are available for them out there. There is so much ignorance surrounding the disease. People look at me in a strange way when I tell them about my status. Maybe because I’m a physically challenged middle-aged woman, to them I don’t fit into the larger demographic of people at risk of contracting HIV.

My plea to the government and other organisations that help us with the provision of HIV treatment is to make sure that HIV services, treatment and care can be accessed easily by people with disabilities especially in rural settings and to provide us with best and least toxic medications for improving our health.

Read more personal stories of people living with HIV on our blog