Supporting HIV Youth: An Exclusive Interview with a Kenyan Youth Counselor

As we commemorate World AIDS Day, it’s important to recognize that young people are often disproportionately affected by HIV and AIDS. Forty percent of all new infections are among young people between the ages of 15-24 and there is an increasing number of people infected perinatally who are now entering adolescence. In honor of World AIDS Day, Pathfinder interviewed Samuel*, a 24-year-old young man born with HIV who has dedicated his life to counseling adolescents and adults in Kenya on how to live healthy, full lives regardless of their HIV status.

Born in Nairobi, Samuel lost his mother in 1991 to AIDS. After her death, Samuel was raised by a stepfather who passed away in 2002. Orphaned at 16, his stepfather’s brother took him in and continued his upbringing, supporting Samuel and his aspirations for higher education.

In 2009, Samuel received a diploma in counseling from an esteemed institution in Nairobi. This enabled him to obtain a job as a counselor at local hospital, where he currently provides advice to people infected and affected by HIV. His skills and personal history as a young person living with HIV also led him to join the Positive Youth Initiative (PYI), a Pathfinder-supported youth group whose mission is to promote positive HIV prevention efforts by supporting youth living with HIV.

In late November, Pathfinder staff spoke to him over the phone. Here are some excerpts from our conversation:

Q: What do you find are some of the biggest challenges you've encountered? What do you see people struggling with?

"Acceptance -- to live positively, to have a positive attitude toward life, to want to push forward regardless of your positive status -- is the main root of all challenges."Acceptance—to live positively, to have a positive attitude toward life, to want to push forward regardless of your positive status—is the main root of all challenges. If one is still struggling with acceptance [of their HIV positive status] they might be guided through all the necessary steps (i.e. stress management, a good healthy diet, enrolling to a comprehensive care clinic and adhering to your appointments). But if you’ve not accepted yourself, even the best nutritionists, counselors, doctors in the world can't do much good, because it starts with the self, you have to start with you before anybody else can do anything.

One quote I like to share with people says that "life is more like a race, where it’s not about winning the race; it’s about falling down and being able to pick yourself up with dignity and finish the race." I always emphasize to people that being able to pick yourself up with dignity is what acceptance is all about. Acceptance is about being able to look yourself in the mirror and regardless of how you got the virus, you can still have the desire to want to live and exhaust all your abilities, talents, and basically live your life to the fullest.

Q: Do you think part of your strength is because you've had a longer period to think about the fact that you are positive, or do you think that it’s all about the individual so it doesn't matter how long you’ve known?
For me, the support I got from home really played the biggest role. Thanks to that support, I was still motivated to push on with life; I was still motivated to want to pursue the best. I was given the correct information to make me aware that regardless of one's status, life doesn't have to end until that specific point when God decides it’s time.

One thing I've discovered amongst the general population is that sometimes that kind of support system is lacking. It could be that caregivers are not sufficiently supportive, or maybe just that people don’t value to the importance of counseling or have access to the simple act of sitting down and listening and voicing their fears. In the environment that I grew up in, you could voice your fears and talk about some issues openly, and you would be given counsel and guidance. And, I think at the end of the day those are the few things that propelled me to continue on with life. For me, I was also so close to God. Those are the things that have really pushed me to where I am.

Q: Would you say that supportive environment you grew up in is one of the things that prompted you to become a counselor?
Actually no. When I first went to school, I was going to do law. Then I wanted to do literature, because English was my favorite subject. It still is. I love Shakespeare. I love his love for words; it’s just amazing. I just love anything to do with English and poems.

But I sat down and was looking at it, and I had to ask myself where all this would be useful with regards to my life? It just appeared to me that I haven't been around this long so I can go get lost in books somewhere, or be studying something, or maybe be a professor in Literature or what have you, or a lawyer in a court. It just occurred to me that my life was meant to be lived differently, and so I was looking for what could be the best thing to do and counseling came to mind.

"I think having a fulfilled life means I can go to bed and look up and say I did my best today, that I might have made a difference to this life; I might have touched that life."A lot of people came up and told me that counseling is one of the things that they think I'd be best fit to do, and I went for a diploma. At the end of the day, I've gotten a lot of satisfaction in what I do. I think having a fulfilled life means I can go to bed and look up and say I did my best today, that I might have made a difference to this life; I might have touched that life. At the end of the day, those are the things that propel me to do counseling—thinking of ways I could make my life experiences useful to the world out there.

Q: Do you encounter youth who are struggling with starting relationships? As someone living with HIV have you struggled to have relationships with people?

Normally I tell people that each person goes around it differently. We tell people to assess their specific situation. If you want to disclose your status, you should have a good reason as to why you'd want to tell, and you have to find a good time and way to do that. Relationship-wise, we remind people that when you relate to everybody, they do not have to know your status unless at some point you feel that you may put them at risk, or you may require their assistance either as a treatment supporter or just a friend with whom you can be yourself with. And that's where disclosure comes in.

We always remind people that in the event they are entering into a serious relationship or commitment, sometimes it is good to realize that you’re being able to be yourself without wearing a mask around the person you love and them being able to love you back regardless of status defines love. So if you are in a relationship with someone and you expect it to have a good end like marriage, then if you do keep it a secret then it only ends up blowing up in your face.

We tell people that, what might be in your blood system or body system (HIV specifically) is not eating away at your life. Just your immune system. So we encourage people to still move on, relate and make friends, still have targets, still have goals.

Q: Is there any difference amongst young people toward this issue compared with older adults? Given that most young people have grown up hearing about HIV, has it had any impact on youth being more open minded?

Most young people who get into relationships would rather do so and not really know their partner's status. They would rather assume everything is OK and assume some things don't exist. But then again, there is also a growing trend in wanting to apply the use of condoms because the understanding of HIV and STIs has really progressed well. So a good number of people are opting for safer sexual practices, which is commendable. But those coming in for testing are still a small number, per my view. In my opinion, a lot more could be done.

Q: Are there challenges in accessing care? For example, do people come in and say “I went to the clinic but my medication was not available” or “I can't make it because it’s too far away?”

Yeah. In every health care institution you find such cases and it’s the social work department that tries to make sure there are fare reimbursements that can be provided for the really needy clients. In terms of the youth, I've noticed that unless they are still struggling with acceptance, most of them are very keen on coming to clinics on time.

But one thing that I've discovered that this country could really use is something like support groups. More adults seek counseling services than the youth. I think having the availability of a support group [for youth] would really assist this. I only know one hospital that has a specific date where only youth can attend the clinic. But after that, it’s mostly adults that come to counseling, not the youth. Most of the youth I know just tend to want to remain quiet wherever they are. But also its because most support groups are adult centered.

Q: The Positive Youth Initiative that Pathfinder is working with, is that the support group you're referring to?
I'm in three support groups. Two are at my place of work. There’s a support group which is more adult oriented. And then we have a pediatric support group for mostly our pediatrics clients and care givers. I've been blessed to be a co-facilitator of the adult group for the last two years. But I’ve been considering setting one up for the age group of 18-25.

I was introduced also to the Positive Youth Initiative which was just a big surprise to me. It was really an encouragement to see that there's somewhere in the country where youth can meet and just have a good therapy session and voice their fears, achievements, struggles and so on. I would really be in a jovial position if I knew there were more PYIs out there because It’s just one of a kind. At the end of the day the youth in the country really need a support system like that, because it’s more youth oriented and youth-friendly. Most of the people there think on the same level, which makes it easier from them to relate, and open up to you and discuss issues. It's actually one of the effective ways of pulling the youth towards the acceptance of counseling, because group therapy is a medium where you can introduce counseling to people.

There is somewhere now where youth can run to every Saturday and voice their concerns or have people they can relate to at the same thinking level. Most of the support groups in the country have an average age of 30 to 40. When you have an 18 year old attending such a meeting, they obviously feel out of place. So PYI has really done a great job for the young people and it’s my hope we can have more of those around the country so that we see what number of youth we can reach out to and encourage them and help each other grow.

Q: Last there any message you would like to send on Worlds Aids Day about young people living with HIV?

I would just say that whether a person is positive or negative doesn't really have to determine where they get to in life or whether their lives should be paused. At the end of the day, we are all given the same amount of time every year—24 hours, 365 days. Whether one is positive or negative, we still need each other. A positive person might end up marrying your brother or your sister or might be relative of yours, or your colleague in the same company. Thanks to the inventions of the ARVs and the comprehensive care clinics, we find that more people are coming up and they are coming up strongly, and they are accepting their status. And so if you discriminate against somebody because of their status you may be pushing away somebody who would've been a good friend, colleague, and who you could've learned from.

For me, life is basically divided into two lines; you could be having diabetes or not having it, having cancer or not having it, having HIV or not having it. Whichever side of the line you are on, whether you don't have any of that or whether you do, it doesn't matter. It matters what you do with your life. In the end, it’s how you lived.

"And what a world this would be if we stopped discriminating against specific persons but rather work together towards a greater good. Remembering that there is no lesser or greater persons."Whether one is negative or positive, it shouldn't really change people’s perception of them. They should just be treated as normally as anybody else. And one thing I can say about me is that with most of my friends, they are very cool with the way I live my life, because most of them I've already disclosed to, and they are OK with it. We still have fun; we still meet; we still talk as much; they remind me to take my ARVs from time to time; and, they always remind me that whether someone is positive or not, it doesn't mean they are dead; it doesn't make them any less a human being. Regardless of their status, they are still 110% a human being and they just deserve as much a fair chance as anybody else. And what a world this would be if we stopped discriminating against specific persons but rather work together towards a greater good. Remembering that there is no lesser or greater persons. Humanity deserves it.

That's a great message. Thank you so much Samuel.
It's my prayer that the information will be able to bring about a difference, even if it’s just one life. Perhaps one person that might have been transformed because one thing or another we said. I think at the end of the day being able to play a part in that is always a satisfying thing.

*The individual’s name has been changed to protect his identity.

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