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"The moment I've got the diagnosis...": Real life stories

Advice and stories from patients diagnosed with HIV

“I never really engaged in risky behaviours. I’m not one to party or do drugs—you know, all of the stereotypes associated with it. So, the diagnosis came as a shock.”

“I started the medication on Friday morning and I was violently sick throughout the whole day and night. And on Saturday, my doctor wasn’t available. I went to the pharmacy, which was situated in the same building where the clinic was, and I spoke with the pharmacist. I told her my concerns and that I didn’t know whether to go to the hospital or to the pharmacy. The pharmacist [helped me adjust the timings of the dosage]. I’m glad I did go to the pharmacy; she was very, very supportive and she told me what to do and not to worry.”

“Accept the diagnosis. Accept that things are going to change. But don’t give up: life does go on and things do get better. The good thing that came out of it is that I’m more careful in terms of my health: exercising, trying to keep fit, eating healthy. I feel that I have to be more careful, and, in the end, being more careful is not such a bad thing.”

“Ask a lot of questions. If you’re not comfortable with your doctor, switch over and find somebody with a good bedside manner.”

“I was diagnosed before I met my partner, and we’ve been together now over three years. When I first met him, I told him about my diagnosis. He’s not HIV positive, so it was really hard at the beginning. I was afraid of rejection. It had happened before. I was very honest with whoever I met, and sometimes it worked out and sometimes it didn’t. He had a hard time, and he needed time to think about it. Sure enough, he came back 24 hours later; he didn’t want to give up on us.”

“With [partners], it’s important to tell the truth; it’s best for everyone.”

“I’ve been undetectable for the longest time.”

Advice and stories from partners and caregivers

“He is monitored, like with any other illness, such as diabetes and other chronic illnesses. By adhering to the treatment, he lives well. We are always looking out for new [treatment] information, to see if they’ve discovered anything new.”

“I used to wonder, will he be more fragile, will he be more sensitive? But no. In fact, for more than five years, he’s been undetectable and his health is just like mine. When he catches a cold, it lasts the same as mine, same amount of time. You just need to monitor the illness well and take the medication. It’s very reassuring.”

“When I saw how destroyed he was [with the diagnosis], I told myself, I have to be supportive, I have to help him. I sort of put my own feelings aside in order to support him. But it’s not the kind of news you want to hear, ever, that’s for sure. It’s really terrible... The world stops turning.”

“If someone, say, a friend received this news, I would be the first to tell them that there’s nothing to worry about. It’s not like it used to be; things have changed a lot. I would give them the maximum amount of information on how we live with HIV and how things work, and show them that there’s absolutely nothing to worry about. You just need to monitor regularly and follow the treatment faithfully.”

“I was a bit scared at the beginning, but mostly for myself, because I’ve always taken care of myself, and I didn’t really want to date someone who was HIV positive. I never really dated anyone who had HIV, so I thought it was just like a terminal illness. But he explained to me more about the treatment that he takes, and I’ve actually met his doctor, too, who explained to me what it means to be HIV undetectable. So, things have changed, because I feel more reassured. I feel differently now. I think it’s more like any other person who is receiving treatment for diabetes or any other disease.”

“I’m still conscious about the disease, but less than before, because after talking to the doctor and knowing more about the treatment that he takes, I’ve been more reassured.”

 

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