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When I go to the AIDS Center, I wear a hood so that no one sees or recognizes me

  Yesterday was Mother’s Day and we sent out best wishes to everyone. Today we will tell you about what it means to be a…


Yesterday was Mother’s Day and we sent out best wishes to everyone. Today we will tell you about what it means to be a mother with HIV. Here are two stories of women living with HIV from Kazan.

First story

I’ve been living with HIV since February 2017. I was infected by my husband, who at that time was my boyfriend. He told me right away that he had HIV. I took a rapid test three times and the results were positive, and then three months later – positive. It seems there was a window period.


I am now on maternity leave. My daughter is 4 months old. So far all her test results are negative. The last one is to be done at 6 months and we are waiting impatiently. I hope everything will be fine: during my pregnancy I took ART, followed all the recommendations of the doctor, was given an IV drip during birth, and we gave the baby therapy for the first month. For my entire pregnancy I was afraid that the baby would be born positive. I would feel extremely guilty since my daughter is completely innocent and I would condemn her to such a life. My husband gave me great support the whole time. I also went to the mutual support group of Svetlana Izambaeva [an HIV activist from Kazan who is the head of the Svetlana Izambaeva Fund and a member of the EVA Association], listened to others and it helped me a great deal. Now my status comes to mind only when it’s time to go to the AIDS Center.


I wasn’t told anything about breastfeeding, I guess because they decided that I already knew.


It was actually Sveta who warned me that I wouldn’t be allowed to breastfeed the baby. When I had just been diagnosed, I wasn’t morally prepared and it was a difficult period. I called up Sveta and asked her if I could have a baby as I had dreamed of it. She responded: don’t worry, they’ll give you therapy, you’ll give birth, everything will be fine, just don’t breastfeed. But the doctors didn’t go into the details. I was well informed about HIV and sometimes I told the doctors things myself. Therefore they didn’t tell me anything about breastfeeding, apparently, because they figured I knew about it already.


When the nurse came to my house for the first checkup, I told her about my status and started to ask about how it would be marked in my child’s medical chart and how it could be reflected on the child in general. She told me that they wouldn’t make a note of it in the child’s chart. Rather they would attach a certificate from the maternity ward that the mother is HIV positive. When my daughter is taken off the register, they will remove the certificate from the chart. It was then that I asked about milk formula, as from the chat [group for mothers living with HIV] I learned that I was supposed to receive it since I’m HIV positive. The nurse explained what to do and now I am receiving milk formula. I didn’t have to gather any documents for that to happen. But my daughter doesn’t drink the formula as she has an allergy to it. Therefore I have to buy specialized formula and give the formula that I receive to girls from the chat: one 200ml can is provided for each day. That is enough for 1-2 feedings, and the child should be fed about 8 times per day until age 1. So of course what’s allotted for the others is not sufficient. Actually our pediatrician even said if there is an opportunity it’s best not to give this formula to the child before 6 months. But many people don’t have a choice.


Buying hypoallergenic formula is expensive: 650 rubles for a can which lasts 3 days. My husband is working on the stock exchange and I’m on maternity leave. Good thing that my parents help us out.


Right now I’m not taking ART. When I had just found out that I have HIV, I also didn’t take treatment. My doctor said that for now my body is able to take care of itself, all my tests are normal, and I don’t have to take pills if I don’t want to. I started to take treatment only during my pregnancy. When I gave birth my doctor suggested stopping treatment and to see what would happen to the cells. When I went to see her last time she recommended that I start again. She said that according to the new recommendations treatment is prescribed to everyone immediately. I will have tests done and decide. My husband also started to take medicine.


My gynecologist knows about my status and is completely normal about it. However once when I was being monitored during my pregnancy she was on vacation and another doctor checked me. She didn’t even do the examination. Then she told me to sign the chart and I asked her for a pen. She looked at me, took her pen away, pulled out another, and gave it to me. And put on a mask.


Recently I had an operation. The first doctor calmly reacted to my status, and told me which documents to gather. When I showed up on the day of the operation with all the documents and there was another doctor, he started to talk me out of the operation. He was looking through the documents, hoping that there would be one missing and so he would be able to send me home. He asked how urgent it was that I had the operation, if it would be possible to reschedule it. I fought back: anyway I had already made sure everything was squared away and left my daughter at my mother’s house. In the end he did the operation.


This is probably the hardest thing: there is constantly something to be worried about when and where it is related to your status.


There is also the constant fear that someone will find out. Near the AIDS Center there is a hospital which many of my colleagues go to. Therefore each time I go to the AIDS Center I wear a hood so, I hope to God, that no one sees or recognizes me.


I plan to tell my daughter about my status. I don’t know when and where yet.


If I were to tell her when she is 7 or 8 years old she may tell her friends. And as a result the relationship to her could change. It’s a good thing that I met Svetlana Izambaeva, she knows all the nuances and details of disclosing one’s diagnosis to relatives and close loved ones. By the way, I now go to her group with my baby. It’s really wonderful that there is such an opportunity. Huge thanks to her for all she does.


Second story


My husband said that I had to have an abortion and we had to get divorced


I learned that I have HIV when I was pregnant. My husband has a negative status and he immediately said that I had to have an abortion and we had to get divorced. I talked him out of it considering that he didn’t know anything about HIV. Now everything is fine.


I started to take treatment during my pregnancy. I have been taking it ever since to keep my husband safe. However after giving birth I slacked off a little bit: if during my pregnancy I was strict about taking it at 9am and 9pm, after giving birth sometimes I am caught up and miss my morning pill. My husband is often away on business which means I am home with the baby and dog by myself. It’s scary, of course. I should have some lab tests done.


When you are a mother with HIV, the hardest thing is taking your pills on time.


Remember in the series “Call DiCaprio” when the main character learns of his diagnosis and people started to be very fastidious around him, washing everything, watching him closely, to make sure everything was sterile? It was pretty much the same for me at the beginning. And when my husband’s parents found out, it was even worse. They told him that he married a prostitute. They acted as if I was found at the dump. I think that no one is shielded from this.


If there weren’t this reaction, like “ew, you’re infected,” I would probably live freely with an open status.


I couldn’t eat anything after giving birth. Therefore broth was brought to me in the maternity ward. I was in an isolated unit because we had a separate section for people with HIV. I decided one time that I would ask for my food to be warmed up. The request was denied. I asked, “Why not?” The nurse told me, “Do you have any idea why you are in this area?” I answered, “I know it’s because I have HIV.” “Well there you have it, you answered your own question.” I was extremely hurt. I started crying and left. Later on I approached her because I needed to know from where such a relation to me had come. I said to her, “You must understand how stupid this is. You work in medicine, surely you know that HIV is not transmitted in everyday interactions?” She apologized. She said, “I know that HIV isn’t transmitted like that. But if mothers from other sections with other infections see that I am heating up your food, they will want me to for them as well. But for them it’s not allowed.” That appeased me a little bit but in any case it was wildly insulting.


I didn’t breastfeed my child as the infectious disease doctor warned me. They also told me this in the maternity ward. When the orderly came to visit me at home for the first time after I was discharged from the hospital, she told me right away that I could receive milk formula and that it should be applied for immediately. Mothers with HIV are provided with milk formula for half a year and then they must cope on their own. Although I was able to strike a deal with the head doctor and I am still receiving the formula although the baby is already 8 months old because my daughter is underweight. At first it was enough formula but my daughter is growing and now she needs more so we have to purchase some additional formula. This way it is not very expensive but if we had to purchase the entire volume ourselves it would be hard. But I think that one shouldn’t skimp on the child.


In the future I would like to tell my daughter about my status but my husband won’t allow me. He still believes that only prostitutes get HIV. Therefore our daughter shouldn’t ever know about my disease.


However times are changing. Now it’s being put on screens in films, demonstrations take place. Recently I saw a demonstration with the opportunity to be tested anonymously for HIV. There was such a long line there because people wanted to know their status. I think that’s really awesome.   

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