#HIVsurvey: Positive People Expose Their Biggest Fears

Over 175 individuals living with HIV respond to a social media survey asking them to describe themselves in one word– the results may not be what you are expecting.

Who likes social media surveys? Honestly. If you were with me right now, all you would be seeing is my face in a deadpan stare at you and you’d be listening to the best group of crickets letting you know definitively that: it ain’t Josh Robbins.

But, I said “what the hell” because I wanted to see if some of the people that connect with me on social media would share responses to some pretty simple, yet tough questions. I’ll be the first to admit, that some of them surprised me.

For one day, I used my HIV Awareness Facebook Page and Boss & Top HIV Twitter account (kidding) to implore people to take my simple #HIVsurvey. 176 people finished the survey. So thank you to all of them.

 

The first question that I pose is: Which Best Describes You? 

• Living with HIV and on meds
• Living with HIV and not on meds
• I am HIV negative

Next, I asked the users to rate themselves on a 5-star scale, indicating how they view their currently journey “living” (interrupted “living with HIV” but intentionally left vague).

Next, Do You Personally Experience HIV stigma? 

Answers ranged from, “yes” to “no” and includes these responses plus more:

• Not anymore
• On occasion yes
• Only once.
• In my day to day? No. In dating apps, sure.
• I don’t really tell people I’m positive.
• Not anymore. I simply don’t allow it.
• Yes from other gays in the gay community.
• I do from guys whom are NEG and on PrEP
• Yes, when it comes to dating
• Not directly, but tons of passive aggressive angst.
• Thankfully no.
• Yes. Especially in the gay community.
• Also, did I mention I’m tired of being stigmatized at HIV organizations?
• No. Most are supportive. Overly supportive.

Next, What word best describes you? 

These words make me smile and terribly upset. But it shows us that not one journey is the same.

 

And finally, what scares you about living with HIV? Here’s a few responses.

Stigma
Criminalization worries me the most.
That I’m gonna be treated like a leper
Honestly…nothing. I plan on living a full life and then some…God willing
Loosing my job therefore my insurance
Being treated like a contagion patient out of ignorance
The constant rejections from other men
Right now not much
People finding out that I have it. As I live in a small country town
I could be alone for the rest of my life.
Loss of meds
The meds will ruin my organs.
Dying alone
Uncertainty of the unknown
Just learned to live with it I had to
Nothing
Dying
Never finding a partner because of my HIV since education about HIV is nearly ninexistant.
Dying alone
Nothing
Rejection
Passing it to someone else
That one day the meds might stop working. What people will think of me
Getting sick
Not knowing if I will ever be well again.
Never finding my love and losing friends who now think we can’t hang out
Running out of energy
Being alone
That people will assume my child has HIV.
judgement of others
Failing organs
Not knowing if I will find love again.

If you want to download the full #HIVsurvey results, details and link below.