First-hand: young people, HIV and how to do better

The biggest challenge of living with HIV is the stigma you can experience in all corners of your life, and sometimes when you least expect it.

Whether it’s the attitudes of family, friends, health workers or anyone else – stigma can have a profound effect on how we feel about ourselves.

When I was first diagnosed, I joined a support group and we used to be given tea at the facility. The cups would be washed afterwards, but then the doctors would still not use the same cups. So that's one of the reasons I stopped going to support groups. They were giving us book knowledge, that you can't transmit HIV that way, but their actions told a different story. I don't understand why they did that, but they did it many times in our faces.

Feeling interrogated

I think, at least hope, such stigma in health facilities is less common now, but there are still many barriers for young people seeking sexual health services. For instance, if you want to use PrEP, you have to go through a whole process to explain why you think you're at risk and why you need it.

I'd say I go to one of the best facilities in my country but I still feel they infringe in my space, even though they don't intend to. I'm supposed to go to the hospital once every three months. But I don't do that. I go sometimes once a year because I'm trying to avoid questions like, ‘Where is your boyfriend? Is he also living with HIV? You should bring him for testing. You should bring him for counselling. Oh, now your viral suppression is OK, you should get pregnant!’

I wish health staff would stop asking young people so many questions. I have to first give a disclaimer that as young people we are not a homogeneous group. And I know things have changed for me over time. When I got into treatment in 2014, I really wanted all the attention I could get, because I felt like I was going to die. I needed my clinicians to walk hand in hand with me. And they definitely did that. I went to the counsellor whenever I needed to speak to someone. The problem is later, they don't think you have grown, so they still want to baby you when you’ve become an adult.

I would say that each young person is unique and healthcare workers need to know that and they should not try to handle young people with the same old script. I'm a different person than the person I was when I started care. Now I don’t want to go to the facility so frequently. I just want to take my medicine and not be reminded that I am living with HIV all the time.

Young people and support groups

Another thing I have an issue with is that young people are often denied their medication until they become part of a support group. So while support groups can be good, they don't work for everybody. And I think young people should be given the autonomy to choose. But that's not how it happens. Within support groups, I think they should let young people lead the conversation more.

Currently we have peer educators and mentors in most facilities and that is a good thing. But some young people do not like to be handled by other young people because they worry they will talk, so they prefer to be handled by someone who is a bit older and looks more professional.

A more integrated health system

Health facilities should be a little bit more dynamic. They should try to embrace digital technologies and self-care interventions for young people who don't feel like they need to be babied anymore. It’s also time to integrate the health system so that people with HIV are not separated out and stigmatised.

Since Covid-19, young people look more for information via social media and many facilities have shifted to online platforms. But with this comes the issue of digital inequality. So if you don't have a phone and we want to send you a reminder to come to your facility you may miss out.

While there are advantages to digital advances, it doesn't mean we should stop with the old ways that can reach more isolated young people. There's power in personal touch. There's so much power in the physical connection. But now, due to constrained resources, everything is shifting.

The digital gap and gender divide

In my experience, I see many young people don't have access to digital technology, especially in rural areas. And if they do have phones, they do not have bandwidth or data. We risk leaving a huge number behind, because for some it’s a choice between food or a smartphone.

During the pandemic young women confirmed that they didn't have access to phones, at the time when the world was quickly moving to digital. Recently we did research on whether women and girls are still confined to their homes.

We found that often it’s their partners who have phones, so if you want to reach them, you reach out to their partners, who are mostly male. In this case, it's because they're the breadwinners, while many young women stay home doing domestic chores. It's something that came out really strongly that they didn't actually have access to digital platforms.

So while we are moving swiftly into a digital era, we are leaving behind many girls because we are still trying to overcome the patriarchal systems that mean girls still don't have access and control over assets and resources and even education. And of course without education, you will struggle to secure a good job and you will not be able to afford certain aspects of this life including, so called luxuries, such as phones and all other digital platforms.

Things are moving fast and many of the changes are great. But tackling stigma, and gender inequality has to go hand in hand with advances in medicine, health and digital technology if we want to ensure all young people have the access they deserve to judgement-free sexual health services.