Normalise HIV Conversation

Submitted on Jun 13, 2024 by  JoDha

A random conversation in office that revolved around HIV:

Me: I am feeling so tired nowadays taking HIV medicines. How I wish there were a cure. I can't handle it anymore!
(Burst into tears 😭)

My colleague (while hugging me tight): You take only ONE medicine. Whereas me, I have to take medicines for my diabetes, for my blood sugar, for my vitamins, apart from ART. In a day I am popping like 4-5 pills!!


Sometimes, I feel I don't have the right to complain about side effects and collateral damage from my ART (anti-retro viral therapy). Many other PLWH would love to be in my place, when they see my social media full of life. These many people too put up with horrendous side effects day in and day out and willingly do so, popping in many pills a day hoping to add months and years to their lives.

But here, we ain't complaining.
So what I am trying to convey is that we were talking about survival. Instead of suffering in silence.

If we don't speak up about what we are dealing with regarding treatment side effects (or whatever it is), who will know? Who will listen? Who will care?
And how will things ever improve for those who come after us?

Of course, I'm grateful to be alive, but…

This does not mean I or you must be quiet.

Silence will NEVER protect you, instead it will make you fall deep in depression.
Hence, talk.
Have a conversation.
Learn about how others too are coping.
This will help you feel better- like it did to me knowing that how grateful I am to be on just one pill. ❤️



A Girl Like Me blogger, Jyoti "Jo" Dhawale.



Submitted by KatieAdsila

Great blog, I understand, I used to hate having to take meds everyday, but now I take a handful of pills every day and only one is for HIV, I’ve considered getting on the injections but then thought why, I’ll still have to take meds for other conditions every day. 
But don’t feel guilty for complaining, no one’s journeys are the same, your problems are unique to you, and how you respond to them is unique to you, your needs are different from everyone else’s, just because someone else may have it worse than you doesn’t negate your experience to you. 
But you’re right, conversations about HIV need to be normalized, it would solve so many problems.
Thank you for sharing 

Submitted by tj30trust

Hello Jyoti.

Thank you for sharing what many of us who are not taking Capenuva are actually feeling. I was very adamant about adhering to my regimen, and then a life ended, which completely blindsided me. Today, I have to work on adhering to my treatment plan. I need to look into Capenuva, so I don't have to take those pills anymore. What you are feeling is valid. 

Submitted by Marig2016

Jo! Thank you for sharing - I think its important to recognize that we can live in gratitude but also in sadness - just because your experience is different doesnt mean your feelings are invalid! Know that you are loved and have a sisterhood behind you thought the gratitude and the sadness. Thank you for being a voice! xoxo 

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