Fucking Antiretrovirals.

Most are not worth the bother to take them. The constant interface with the ”helper” medical community will test your resolve to live.

Unless you like being examined and turned inside out every other day. Social missions.

Tenofovir Disoproxil Fumarate is now a Big Girl problem. A man walks into a bar. Bartender asks what his poison will be. My own cocktail would kill a herd of horses.

Once an approved medication has passed the test, it will be manufactured by the millions. Or billions. Depends. Antiretrovirals fall into this get rich quick money-making catalogues of boxes.

It was only a matter of time before HIV became its own social media platform. I’m not sure exactly what we put into any social media, but I have this feeling, whatever it is, it’s too much.

Not another social media site.

Yes.

This one is different.

It drives me a little Miss Sugar Nut but they all do.

I wasn’t reading the directions.

I never read the directions.

Do you.

These sites work or they don’t work and don’t waste my time.

For whatever it’s worth, I thought the questions coming at me were from the people who manage the site. I was mistaken, and I owe the people who asked those questions (the last one I answered asked me if I tell little white lies and I said no) an apology.

Because I went off a little tiny bit.

But who DOES manage this site.

No one knows who they are.

Red flag. Social missions.

I did track down the venture capitalists who see the site as possibly making money or why are they here.

Now that I’ve read the small print, I see where they share information with researchers. This is articulated in an offhanded way as if to imply occasionally. As with academic institutions. My fear, as with most anything that has to do with HIV, the term advised consent is the boogeyman.

Who are researchers.

No one knows. They’re kinda like the people on Montgomery in San Francisco who manage this social media site for people living with HIV. My art studio was on Montgomery in San Francisco. The Ford Foundation paid the rent.

This is high end rent. Social missions.

Show me the money.

The people with HIV who are on the site ask the questions. I didn’t get it. It’s pretty lame.

I showed the site to the Smash Street Boys. My little Hard to Reach gang of HIV adolescent ragamuffins. The first thing they wanted to know was were there any sex workers. Or whores as the boys would say.

Compliant was another word they used. It’s a word they use a lot. It does not refer to HIV. It refers to how you deal with life.

The way they mean it, it’s kinda like the word death.

Enter social media. Hold onto your little dick.

MyHIVTeam is a social network designed for people with HIV. support@myhivteam.com

You connect with people. People connect with you.

I am usually extremely cautious. Being exploited sucks. I am an angry man, and get out of my way. For me, the enemy is always the status quo. I wanted ACT UP to go on forever. Social missions.

Here’s a secret: I still do.

There are questions put out by the people involved. The questions seemed designed to explore one’s behavior, feelings, and conflicts that people living with HIV interact with and confront on a daily basis. Like do your neighbors know.

My neighbors are religious hillbillies from Appalachia. I do not want to know what they know or do not know.

I live in the Blue Ridge Mountains. It is a long way from Montgomery Street. I work with boys who have HIV. We do not like the AIDS orgs. We find them stupid and they lie a lot. Especially about advised consent.

I haven’t really had time to become intimately involved with this site. Not another social media site. Our photographs on Instagram already say way too fucking much.

At first, like the fool I am, I thought the questions coming at me were from the people who operate the site. But now I see that these questions are being articulated by the people living with HIV who are ON the site, and are attempting (and mainly failing) to create community. I am not at all sure that an HIV community can be created. People like me are too intolerant.

Example: One recent question I saw had to do with bone loss as a medication side effect. People just reacted with a kind of weariness. I find little activism that would be pointed at the “helper” communities, and the site seems to focus on our interpersonal problems and relationships.

This does not interest me much.

I am more interested in a critique of the “helper” orgs because I find them far too often to be enablers for Big Pharma. Like Public Health.

Public Health may be treated as a social mission, whose legitimacy is often implicit or considered self-evident. For example, public health as a mission may refer to the overall improvement of health, with a view positively to remedying health inequalities. It may also be presumed that checks on the scope of the mission—for example, the proportionality of measures—is implicit in it. When this is the case, public health becomes in essence a complete social or political theory; that is, public health entails all relevant imperatives. Although conceptually tenable, it is not clear why such a social theory should be labeled Public Health. It feels like we ourselves blame ourselves. I get this feeling from reading other folks on this social media site.

Practices in different social areas are sustained within the mechanisms of social control and management of vulnerable populations. Thus, there is the feedback of the biomedical paradigm now materialized in different practices in different areas beyond the traditional health services. It is concluded that health promotion in areas of daily life presents the challenge of expanding the potential autonomy of action of individuals in movements that consider the potential social areas in constant transformation of everyday life. I am going to put out a question about this. I might get more involved. I want to see some focus put on the so-called helpers who are not too fucking helpful.

There have been a flurry of lawsuits against Big Pharma recently. Social missions.

Lawsuits around Truvada are almost breathtaking considering how PREP is next to god. I have always thought from day one that we were being sold a bill of goods.

I follow developments via National Law Journal.

I might even discuss how I FEEL about being so promiscuous and now have perhaps what I deserve. Guilt.

I might want to discuss sex work. We’ll see. I am too compliant.

Some people talk of family as if participants are family.

The word family is a huge red flag to me. You do NOT want me to be in your fucking family. You would begin to hate Christmas.

I want to ask people about the failures of Public Health and the CDC.

But the site does not seem geared toward activism.

I need activism.

I suppose I have to fucking make it.

I do not need advise about my personal relationships and how HIV affects them.

I may discuss the Smash Street Boys and Smash Street. Just Before the Cure. Social missions.

Maybe. I will have to make the time to do this. Maybe Kadin can do the dishes once in a while. Not.

Most of these questions are designed around relationships between people living with the disease.

It was not clear to me that the questions being asked of me were not coming from the people who manage the site. Maybe they ask questions, too. I have not had time to figure it out.

I wonder if boys with HIV could fit into this. I doubt it. Way too explosive.

This from the ABOUT page.

What is myHIVteam?

myHIVteam is a free social network that makes it easy for you to:

get the emotional support you need from others like you, and
gain practical advice and insights on managing treatment or therapies for HIV

When you or a loved one are first diagnosed, it’s not uncommon to feel alone and uncertain of where to find the best information and people that can help you now. We believe in making it easy to find the best people around you to help you get the answers you need, and to find support from people who can truly relate. The main currency on our site is trust – the more you share in posts and your stories, the more questions you ask and answer, the more your support will be valued by other members.

myHIVteam is the only social network where you can truly connect, make real friendships, and share daily ups and downs in a judgment-free place.

Below are the most popular areas of the site:

Activity page is where everyone posts updates – including images, stories, thoughts and anecdotes. It’s where daily triumphs and trials are shared and supported.
Find People Like You based on location, your diagnosis, and age. You can browse everyone’s story and updates, which helps provide insight as you share with others.
Q & A section enables you to search previously asked questions and answers, and gives you the ability to ask your own question that will be answered by others on myHIVteam.
Find Providers best suited to meet your needs based on keyword and zip/postal code or city, and you can see which ones other members have recommended.

The spirit of the site is to foster a welcoming community with open arms. Maintaining an atmosphere free of judgment and drama is very important to us to make sure every member can share their experiences, thoughts and feelings as openly as they wish. All of our members share compassion and deep empathy for each other’s journey. When signing up, many people feel shy at first, but quickly discover new friends and people who truly understand what you’re going through. Once you begin interacting on the site by posting updates, or sharing your story, even answering other’s questions, you’ll quickly feel embraced and accepted by the team of individuals already on the site, who are, by all measures, strangers, yet feel closer than well-intentioned friends and family.

Who are we? Who sees your information?

We are an independent, venture-capital backed startup (called MyHealthTeams) based in San Francisco, working hard on a mission we love. All of the features on the site are designed with one goal in mind; to connect you with others who have been in your shoes. Today with millions of members, millions of conversations, and a presence in eight countries, MyHealthTeams has become the fastest growing and most engaging set of social networks for web and mobile apps in healthcare.

myHIVteam should not only provide you emotional support through the social network, but also be a resource for practical tips, personal experiences, and even referrals to other great doctors from the community. Information shared on the site can be seen by everyone who signs up for an account, but that is it. You can share as much or as little as you like.

On occasion, we will partner with a pharmaceutical company or university if we believe it will benefit our members. We do not allow them on the site, and any information that we share with them is completely anonymized. Please know that anytime we do a partnership or research - we will always let you know and we will be completely transparent about it. We will always respect and protect your privacy. Most important, we will continue to look for ways to empower people on myHIVteam and on the other social networks we’ve launched. You can check out a complete listing of all our sites on www.MyHealthTeams.com.

If you ever have any concerns or questions, we can always be reached at support@myhivteam.com.

My main question is how can I use this site to project activism. Another question is WHY ARE PROVIDERS ALWAYS THE SAME PEOPLE. The same lists. The same people (all nonprofit) taking the same money from the same government. The same actors on the same stage in the same play.

Why is it that Public Health can literally sexually abuse you (do not get me off on this) and there is no accountability. Why are they immune from the law.

I might start naming names. This is why the Big Girls always kick my out of the clubhouse.

Names of people in public Health who are breaking the law like the one that says doctors are required to obtain informed consent.

I have not decided what I will do, if anything.

Why aren’t we talking about assisted suicide. Why is it so terrible for someone to end his life even if his life has no quality to it and he is in enormous pain. Why is this so taboo.

Because it insinuates (at least for us) that the “helper” orgs – or in mainstreamland, mainstream institutions – have not created environments where there is something in it for the people in those environments to want to be there. The implication is obvious.

How is it that we have been told that all of these medications are safe as safe can be.

These are very dangerous meds. Why aren’t we discussing that.

What about quality of life.

Why are long-term survivors valued. It’s ridiculous. I am not happy to have survived the past 35 years of hell. Not at all.

Whenever I write that I get death threats from other people with HIV.

Make my day.

What about what this has COST US ALL. The figures are phenomenal.

Who is making money off our backs.

Why do people think AIDS is over.

What do we have to look forward to. What do we have to live for. Why are we here.

There’s a missing piece here, and it’s called hope. Obviously, we aren’t going to find it with the “helpers.” It might not even exist.

Social missions. Maybe it’s time to start asking some questions of my own.

Tim Barrus

Tim Barrus Blog

Posts tagged with hiv-social-media

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