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How to Prevent Late HIV Diagnoses: My Experience

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Released: September 22, 2026

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I was diagnosed with advanced HIV. Read on to learn what happened after my diagnosis; how stigma, limited awareness, and fear of disclosure kept me from getting tested sooner; and why it is crucial for healthcare professionals to normalize discussions about HIV prevention and routine screening to avoid late HIV diagnoses.

Sumitr Tongmuang
Sumitr Tongmuang
Late HIV Diagnosis

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Before I learned that I was living with HIV, I had been in relationships and had sex without always using protection. At that time, I did not have enough knowledge or understanding of HIV, and I did not believe that I was personally at significant risk.

Later, I began to experience several health issues. I developed skin problems and rashes, became increasingly unwell, lost weight, and felt physically weaker. These symptoms continued, but I did not understand at first what was causing them. I did not immediately think that HIV could be the reason.

Lack of Risk Awareness
Someone who saw my symptoms told me that I looked like someone who had AIDS. I became very upset and angry with that person and refused to go for testing. Looking back, my reaction was actually a form of denial and fear. One of my greatest fears was that other people would find out about my HIV status. I was afraid of being judged, stigmatized, or treated differently by people around me.

As my condition became worse, I became unable to care for myself, and my family took me to the hospital. I was then seen by a doctor and tested for HIV. When I received the positive result, I was shocked, frightened, and extremely worried.

At that time, my knowledge of HIV was still limited. I knew that HIV could be extremely serious, and I believed that I might die. This caused considerable fear and anxiety about my future. While I was hospitalized, I lost vision in my right eye because of cytomegalovirus infection affecting the eye, which resulted in permanent blindness in that eye. Looking back, limited awareness of HIV risk and fear of HIV diagnosis were important factors that contributed to my late diagnosis.

After my diagnosis, I entered HIV care and started antiretroviral treatment. At the beginning, I experienced adverse effects and needed time to adjust to taking daily medication and attending regular follow-up appointments. I also experienced health problems and complications, including opportunistic infections, and at one point, I even required inpatient treatment. With continued medical care, however, my health gradually improved.

Fear of Disclosure
Another major challenge was disclosure. One of my greatest fears was that other people would find out about my HIV status. I did not want people around me or in my community to know that I was living with HIV because I was afraid of stigma, discrimination, and rejection. Even if my friends and family didn’t reject me, I was worried they would treat me differently if they found out. This fear also affected my romantic relationships. I worried about how I would tell a partner about my HIV status and whether that person would still accept me. Therefore, I kept my HIV status to myself at first. This also led me to lose contact with my partner. I tried to distance myself because I did not want my partner to see me in the condition I was in while I was ill.

Over time, as I learned more about HIV, my understanding changed. I realized that people living with HIV can remain healthy and live normal lives when they receive appropriate treatment and take their medication consistently. The information and support I received from healthcare professionals helped reduce my fears and gave me greater confidence in living my life.

I have now been living with HIV for many years. I continue to take antiretroviral treatment and attend regular follow-up care, and my overall health is much better than it was when I was first diagnosed.

From my experience, I would like to tell others not to be afraid to get tested for HIV. Knowing your HIV status early means that you can start treatment early. Early diagnosis and treatment can help prevent serious illness and complications and allow people to continue living their lives. This is the message healthcare professionals need to convey.

I also hope that society can become more understanding and accepting of people living with HIV. Fear of stigma, discrimination, and disclosure can prevent people from getting tested or seeking care. Reducing that fear may help more people come forward for testing before they become seriously ill.

If I could go back in time, I would choose to get tested for HIV and enter care much earlier. If I had been aware of my personal risk, more knowledgeable about HIV, and less fearful of stigma, I could have been diagnosed much sooner. My story illustrates why it is crucial for healthcare professionals to normalize discussions about HIV prevention and routine screening, and I hope that sharing it will encourage more people to get tested sooner. Knowing your HIV status early can help ensure timely access to appropriate HIV prevention or treatment services. People who test negative for HIV can access HIV prevention options, including oral or injectable pre-exposure prophylaxis, and those who test positive for HIV can be linked to HIV care and start antiretroviral treatment promptly, including on the same day where appropriate.

Your Thoughts
How do you decide which patients to discuss HIV prevention and screening with? Does this commentary affect your reasoning? Leave a comment to join the discussion!

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