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I imagined that I have a maximum of 5 years

The story of a mother with HIV

I’ve already been living with HIV for 21 years. I got tested at the Uventa Center in Saint Petersburg. They told me that I have some kind of positive tests and that I needed to go to the doctor to confirm the diagnosis. I cried and cried, thinking it was syphilis.

When I learned that I have HIV, I thought my my life was over. At that time I read that a St Petersburg resident lived for 5 years after being diagnosed. I imagined that I had a maximum of 5 years. Back then there was no AIDS Center. They just spoke to me at Uvent and sent me home. There wasn’t any treatment. I dropped my studies; I stopped everything. I thought I couldn’t give birth so there was no point in getting married, studying, or working. I was studying to be a hairdresser and it required that you have all tests done. 

Then my friends started to have children and they said that they were given treatment during their pregnancies so that the children would be born healthy. I now have three children. The oldest will be 16, the middle one is 3 and the youngest is 9 months old. When I had my first pregnancy I was prescribed treatment. Then I had problems – when I ran out, I ordered more though acquaintances from Moscow so that I wouldn’t have a gap in treatment. I was so afraid to miss a pill or have less dosage. My children have negative statuses. The youngest still hasn’t been removed from the registry, but everything is in order. My acquaintances, friends, and husband help out with the children. The youngest is at home, the middle one – in preschool, and the oldest goes to school while I am on maternity leave.

I’ve been taking treatment for a very long time. I had problems with adherence — my treatment schemes were changed and there were cases where one medication did not go over well and I stopped taking it. I had some depressive periods where I had to convince myself for 40 minutes to take my medication. I didn’t understand what was going on. I didn’t want to see or do anything. Only later on did a friend tell me that I could go to see a doctor about it and simply change my treatment scheme. I also missed some of my treatment during my last pregnancy. I was nauseous and I couldn’t take the pill, and my lab tests were poor. I increased the dosage. By the time I gave birth, I had an undetectable viral load, but regardless the baby was given three medications after birth. 

I have faced stigmatization. However sometimes I don’t pay attention to things that would also be considered stigmatization, for example, when you go to the doctor and they put on two pairs of gloves. That’s the way it is. When we got in a car accident, I immediately notified the emergency medical technicians of my HIV status. I’ve been living with HIV for a long time and can openly mention my status; I don’t think it should be hidden. When I was taken to the hospital, the doctor began to question me and yell at me, asking why I didn’t tell them immediately. 

Also when I was to have a reproductive health operation, I was declined entry to the hospital in the town of Korolyova. The doctor didn’t give me an official written refusal, but I was told that they wouldn’t take me because her last two such operations ended in bleeding that could not be stopped. They didn’t say that they wouldn’t take me because of my diagnosis. I went to another place and had the operation done for money and quickly and my diagnosis was of no problem to the doctor. When I was struggling with infertility I had a doctor that I went to ask me why I would have another baby with my diagnosis and that I should raise the ones I already had. As if I were a person on the verge of death.

I did not breastfeed. In the Center they told me immediately that it would not be allowed to breastfeed. I was prepared for that. I bought milk formula for my babies. It was a bit challenging with my second daughter as she had an allergy and the hypoallergenic formula was more expensive. My mom was a great help with my first child. Having given birth a second and third time, I understand how much I spend on formula and keep a budget. I received some formula from organizations, but 2 packets don’t even last a week. On an emotional level, it is difficult to this day that I haven’t breastfed any of my children. Though maybe it’s easier that I didn’t have to teach them to stop breastfeeding. I am lucky that my children are calm and we have a regular routine. I am able to leave my children when I go to the Center.

I’m planning to tell my children about my diagnosis. My older son knows that I take medication. I say that it supports my immune system and that I need to take them continuously so that I feel amazing. I plan not only to tell them about my diagnosis but where it comes from, so that I can prevent my son from doing the same.

You can help us help mothers with HIV by making a donation of any size. The funds collected will be used to purchase milk formula for the children of our clients – mothers with HIV.

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