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What's One Thing About HIV You Feel Isn't Talked About Enough?

A myHIVteam Member asked a question πŸ’­
San Francisco, CA
February 22, 2023
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A myHIVteam Member

The stigma of HIV has kept it in the background for a long time. This is why it is not general mainstream discussion, like people would talk about diabetes or cancer, HIV is never mentioned or discussed in general.
It is still looked upon as a gay man's cancer, but we know it to be incorrect. Stigma=Faggot
There are a number of aspects to having HIV and the management of it and this is what needs to be put out there regarding U=U, Prep, and other relevant information.
The information is already out there, if you know what you are looking for, but not noticeable enough in the media.
Big Pharma has their advertisements for treatment options available. You see these on the tele and in magazines.
No curriculum in our schools that inform and educate our future generations.
There are a lot of us of who know how to navigate living with HIV and what U=U and Prep means. Most of us here know but most of the world doesn't know. What can we do? We can choose to be safe! We can educate those that we know, if this is an option for you.
HIV, it sits in waiting for a cure.
As long as I've been undetectable, I can confidently confirm that I already am cured, despite the medications and its associated costs. I take my meds like taking my daily multi vitamin. March 15 will be 38 years since diagnosis and 25 years of becoming and maintaining my undetectable status.

I like this question. Mahalo!

February 22, 2023 (edited)
A myHIVteam Member

Preface: this is long but truthful but sorry for the long run- ons, etc. But again REAL!!!
Reading all the responses to the question here had me nervous because I see here too that there are ignorant posts of conspiracy theories that serve no purpose on this site & it should be taken care of by the directors here.
My opinion on the question was, the "mental rollercoaster" one may encounter with this illness especially in the first decade of it when Dr's from specialized clinics, can have you believing the worst if one has, "sniffles, a cough, slight fatigue, etc. & then being sent to specialists over every little thing creates intense unnecessary stress, expense, etc. to the patient over & over again & over a long period of time is when their "ticket was purchased & they are now on mental rollercoaster" from hell that is totally unnecessary & cruel. Don't get me wrong, back 30+yrs ago when i started this "ride" I had great dr's that cared & because I was in a research study clinical setting every little thing was of concern & everyone there was learning at the same time & unfortunately the patients were conditioned to think that any of the "little things" could be the BIG ONE! This in conjunction with losing our fellow patients/friends at the same time it created a vibe of that each year could be our last. So this is the "mental rollercoaster" that was developed with no one person to be held accountable because it was a group effort. Even leaving there & getting a new Dr with a totally positive outlook on my mortality, my health, etc. was refreshing & sad because it was too late. After too many years of the "rollercoaster" & the reality of what was happening to my body after 30+yrs of just all the changing toxic meds that had ravaged my insides. I regret I got caught up in the, "this is my last year", every year for 27yrs. Had I met my Dr I have now back then I would not be in such dire straights now.
It is probably safe to say that this same situation could still be out there maybe not as common so my advice is listen to your body & learn as much as you can about how toxic these life saving needs can be just to be aware of the control you do have even with this horrible virus.
Much love aheforad for ALL going on this journey.
Thanks for allowing my input here. Blessings to everyone. β™₯οΈπŸ˜‡

March 1, 2023
A myHIVteam Member

I am 86 yo. I have been positive since 2005. At first I was very sick. Once on medications everything turned much better. I have been undetectable since 2010. I am in good health. The only medications I am taking is for my HIV. I do my own gardening and lawn care. I live alone.

February 22, 2023
A myHIVteam Member

Aging--what happens to us as we all get older, and are the majority of people with HIV? Many aspects to this, but one not talked about much is finances--what will people who've been on disability live on as they get older? You can't survive on just Social Security, and they're threatening to cut back or eliminate it.

February 22, 2023
A myHIVteam Member

The fact that Undetectable Pepl Cant Pass HIV to anyone After Getting n Staying Undetectable. Unfortunately, a doctor in Oklahoma screwed with my medicine n I ended up detectable again n my spouse n I haven't had sex bcuz of it since November n she was recently tested n my current HIV doctor said that thers was no way my numbers shud b that high only being without medicine for a month n she said likely due to the lack of proper treatment in Oklahoma πŸ˜’πŸ€¬πŸ˜ πŸ˜‘, my numbers are high again. I don't trust condoms to not transmit it bcuz they break too easy so abstinence is wat we're doing πŸ˜’πŸ˜”πŸ˜ͺπŸ˜ŸπŸ’”. We moved to Texas the 2nd week of Dec n I had my new hiv appointment on January 4th but had dun the intake process just before Christmas wen they wer closed (so went above n beyond to get things going) so I agreed to wait til Jan 4th n had medication that day before I left. It's Big Country Aids Resources (highly recommended by Ryan White Foundation n for gud reason) in Abilene TX. If not for them I'd b in a world of hurt.

February 27, 2023 (edited)

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