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A myHIVteam Member asked a question 💭
Geneva, IL

Whether it be a family member, friend , coworker.....etc, what would you tell someone who is interested in knowing,.... how it feels like living with HIV?

November 8, 2021
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Answer Summary

Members shared deeply personal experiences about living with HIV, describing it as a journey that varies greatly from person to person but... Read more

Members shared deeply personal experiences about living with HIV, describing it as a journey that varies greatly from person to person but often involves initial difficulty, ongoing adjustment, and ultimately finding ways to thrive despite the diagnosis. Several members emphasized practical realities like taking daily medications, managing side effects, navigating stigma and discrimination, dealing with changes in relationships and self-image, and finding strength through faith, support systems, and self-acceptance. A recurring theme was refusing to let HIV define them, with many describing it as something they carry rather than something that controls them, while acknowledging the daily emotional weight, loneliness, and the persistent reminder that comes with managing a chronic condition.

A myHIVteam Member

Having lived with the knowledge that I have HIV since I turned 20, I have had 26 years to accept what I have. I don’t see it as me living with HIV, but HIV piggy backing on me for the entertaining ride that has been my life!

After the woman I contracted HIV from left me for another guy (a few months after I had come out of hospital having contracted TB Meningitis) I felt able to disclose my status to close friends, women I dated and now just about anybody I feel it will be useful knowledge for.

The statement from the World Health Organisation that HIV can’t be transmitted by a person who has been on ARV meds and UD for >6 months makes the conversation with a new partner easier, and the first girlfriend I told is now my wife 🥰

November 8, 2021
A myHIVteam Member

I would say that the hardest thing about living with HIV is dealing with the stereotyping and the stigma and the way society still sees us as being punished by God. Sadly we are still outcasts even in 2021, or at least that is how I feel.

November 8, 2021
A myHIVteam Member

Well for me and I've only been diagnosed a few months at first it was difficult not from being sick I never was but just the potential stigma got on meds got to undetectable really quick and cd4 up so that eased my mind so for me nothing has really changed accept now I have huge secret but it's not that bad

November 8, 2021
A myHIVteam Member

The reality is that it is hard... Day in and day out it is 'there'.. You might not think about it constantly but there are circumstances in which you alter your routine or simply going out because of the virus. I have been pretty lucky and haven't had any problems but 10 years of it really weigh on you... I try not to let it control my life or define me, but the truth is that it is 'there'. And the 7:30pm daily reminder is sometimes angering.. So one day at a time is the motto...

January 29, 2022
A myHIVteam Member

I am Always happy when God blesses to see another DAY!!

November 23, 2021

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