First-hand: how to make an impact as an HIV social media advocate

Today, I want to talk about something close to my heart: becoming an HIV advocate. Over the years, I've learned a few things that I believe can help anyone who wants to make a difference for those affected by HIV. So, here's my advice: 

1. Stay informed 

The first step in becoming an effective advocate is to stay informed. Always have the correct information. We are living in a world that has so much information and so much misinformation. And in my experience, the people who are misinformed are always there to counter you.  

This means you have to read the documents. You have to know what UNAIDS has said. What is the latest target? What’s the latest developments in the HIV response, from UNAIDS reports to new treatment options. Understanding where we are and where we're heading is essential for advocating effectively. 

2. Be consistent 

Consistency is key. Building a following and making an impact doesn't happen overnight. It takes time, dedication, and most importantly, consistency. Consistency is what grows your following from five to ten and eventually to thousands. Even if you go viral, staying focused on your mission is what will sustain your influence in the long run. 

3. Find your niche 

Everyone has a unique story to tell. Find your niche and leverage your lived experience to create teachable moments. Whether it's sharing your journey with HIV, discussing treatment options, or combating stigma, find what resonates with you and your audience. Your personal experiences can be a powerful tool for spreading awareness and inspiring change. 

4. Share the lessons learned 

It's not just about sharing your story; it's about sharing the lessons learned along the way. I can wake up every day and say my name is Doreen. I'm living with HIV. I've been on treatment for 19 years. But what is the lesson? What am I trying to tell people? Whether it's emphasising the importance of staying positive, adhering to treatment, or challenging stigma, every post should have a purpose. Use your platform to educate, inspire, and empower others to take action in their own lives and communities. 

5. Focus on your followers not your numbers 

The online space is sometimes very competitive. You might find yourself discouraged, wondering why your follower count isn't growing as quickly as you'd like. But here's the thing: numbers aren't everything. 

Instead of fixating on the quantity of your followers, focus on the quality of your engagement. Those people following you, they're your audience. They're real individuals with real stories and real concerns. And you can have meaningful conversations with them. 

Remember to stay human in your interactions. It's easy to feel overwhelmed, especially as your following grows. In my early days of advocacy, I tried to take on the world's problems single-handedly. But I soon realized that it's not sustainable. You can't pour from an empty cup. 

I know the feeling of wanting to save everyone and wanting to bring everyone on board. But unfortunately sometimes life is not like that. Focus on making a difference one person at a time, saving one person at a time, and remember that sometimes that person you’re saving is you. 

Making a difference together 

Becoming an HIV advocate is a journey – it takes dedication, passion, and perseverance. But it's for me it has been worth it. I continue to share my story and perspective because I believe that if people know that Doreen is living this life beyond her diagnosis they’re encouraged to think ‘hey I can also live a normal, healthy and long life’. 

So, to all the aspiring advocates out there, I encourage you to keep pushing forward, keep sharing your voice, and keep making a difference. 

Doreen is part of HIV in View, a campaign with ViiV Healthcare to address outdated views of HIV.