The COVID-19 pandemic is causing much uncertainty around the world, including for people living with and affected by HIV. Jessica Whitbread shares her account of life in lockdown in Kyrgyzstan, navigating the challenges of being a mother and a queer woman living with HIV...
My name is Jessica Whitbread and I am a long-time advocate for HIV and gender justice. Sometimes, I write policy; sometimes, I make art; sometimes, I engage in direct action activism. And always, I participate in community building. I’m the creator of the annual global holiday, Love Positive Women, as well as the cheeky, queer underwear dance party, No Pants No Problem. I am currently based in Bishkek, Kyrgyzstan, but I am originally from Toronto, Canada.
“Being a mother living with HIV can be challenging at the best of times and even more so in lockdown.”
When my children were in pre-school, it gave me time to work and organize the household. However, in lockdown, my partner and I spend all our time with three-year-old twins. We are looking for ways to share hours to work and have time to ourselves, but the latter never seems to come. I have a more flexible schedule as a consultant, but let’s face it: it’s hard to network for jobs via Zoom. Although I have a few projects on the go, they don’t include the healthcare benefits that are required for people living with HIV. It is challenging.
“Living with HIV is even more challenging in a country with travel and workplace restrictions for people living with HIV.”
In general, I get my medication from Canada and stay away from healthcare here in Kyrgyzstan, where I might have to disclose my HIV status (which is very strange to me as I am an outspoken advocate, including about my HIV status). I was supposed to travel back to Canada, but when the quarantine was declared, my partner and I decided that it was best not to separate. With this decision came the risk of having only three weeks of medication for an unknown period.
Access to ARVs
We attempted to send medication in the mail, but that was denied. Eventually, we decided to just send my medication, in a larger parcel, but by then, it was very expensive and only one bottle arrived. I then had to decide whether to stop taking my medication or to register in the local system and take something different. After doing some research and then consulting my doctor, I found out that there was a medication available in Kyrgyzstan that “should” be okay for me for a few months. On the last day before the lockdown, I went to the clinic, did an HIV test (which felt surreal after almost 20 years of living with HIV) and got three months’ supply of this new medication.
It is stressful to take a different medication from what I am used to. I have changed medication three times over the past 10 years. The first gave me gut issues and very high cholesterol. The second regime brought me dark thoughts and anxiety. The one I’m on now seems okay. For anyone living with HIV, switching treatment is a complicated experience: you put your hand in the grab bag of side-effects. I do, however, feel lucky to have access to a four-month supply at this critical time; many are given only a week’s supply or are asked to take different medication because of limited access to their usual ARVs, possibly due to testing of HIV medications for COVID-19.
I am nervous and undecided about whether or not to disclose my HIV status to healthcare professionals if I require hospitalization due to COVID-19. I am aware that one’s HIV status could be a deciding factor in whether one gets access to a ventilator or even a hospital bed if supplies are limited.
Making connections
I am regularly in touch with women from around the world who have difficulties in the current situation. Many are front-line workers and/or trying to manage advocacy and programmes for people living with HIV. Most of the women I know have kids, varying in age, and are now stuck in close quarters with wild toddlers to grumpy teenagers. Women have now taken on the responsibility for homeschooling on top of their paid work (if you’re lucky enough to be able to work from home) and domestic duties.
“All of these women living with HIV are trying to hold up and support many others, including other women living with HIV who are in even more difficult situations, with loss of employment, lack of food (many women are skipping meals so their kids can eat) or increased violence at home. ”
All of these women living with HIV are trying to hold up and support many others, including other women living with HIV who are in even more difficult situations, with loss of employment, lack of food (many women are skipping meals so their kids can eat) or increased violence at home.
It has been lovely to see how people are connecting. In New York City, for example, a group of women living with HIV, linked to Visual AIDS’s Women’s Empowerment Art Therapy Group and VOCAL NY, made care packages for those in need. In Jamaica, the JCW+ Quilting to EmpowHer Support Group used its sewing skills to manufacture masks for women living with HIV and others in need. Other groups, such as the International Community of Women Living with HIV, are hosting virtual support groups using WhatsApp, Signal and Zoom. In addition, GNP+, ICW and Y+ have launched a bi-weekly newsletter and started to work with local communities to document human rights abuses in relation to HIV and COVID-19.
“While many LGBTQ people live with their partners or lovers, many more do not, making intimacy and sex difficult to navigate during quarantine. ”
As a queer woman living with HIV, it’s tricky in the best of times, living in those intersections. I have a long-term girlfriend who I will most likely not get to see indefinitely, placing strain on our relationship. While many LGBTQ people live with their partners or lovers, many more do not, making intimacy and sex difficult to navigate during quarantine. For those who want to reconnect with others, in many places, even where there is strong LGBTQ rights legislation, they risk being criminally prosecuted for breaking quarantine – thereby demonizing sex, pleasure, queerness and the need for contact.
Many friends in my community are using social media to connect, through dance parties, sexy photo share chat groups, Skype or Zoom dates, and lots of online phone sex. Others are still hooking up with people in their networks, practicing harm reduction and seeing (sexual) partners, either by creating a pod with limited numbers with them or masturbating together in close proximity (which can still be very sexy). This is very important for communities that have historically endured discrimination, persecution and trauma to stay connected.
I participate in a group of queer femme-identified folks and, although it is not HIV specific, it really is healing for me to talk to, flirt and be engaged with other queer people with varied experience. For some, it may not seem like the time to be thinking about sex, but for others, it’s the exact time to be thinking of how to find any pleasure.