Lying on Instagram: Have We Made Living with AIDS Look Too Easy?

And other secrets to fighting HIV

by Corey Saucier

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Photo by C. Saucier

Last week I got a letter from the government asking me to re-certify that I am disabled, and I am shook. Oh, yeah, by the way, I am disabled. I have been disabled for about thirteen years now. A lot of us are. And because HIV awareness and education primarily promotes affirming images that prove that you can still have an active and productive life with this disease; and because we don’t want to scare the new sero-converts into thinking that their lives are over, we sometimes overcompensate by printing ads full of smiling muscular people playing Frisbee in the sun with captions that read “Just one pill a day!” and “Life goes on!” WHICH IT DOES! And as the queen of self-actualization, I have post-its all over my walls that tell me that “I am healed!” and to “Live fully!” I go to the gym, therapy, connect with friends, and wear really cute outfits to convince myself that I am still viable and beautiful and worthy of love…WHICH I AM!

But.

AIDS is still AIDS.

And I have had AIDS for more than twenty years. My joints are swollen and locked; I take more than fourteen pills a day, including a substantial amount just to make the pain bearable; I have been hospitalized and operated on more times than I can count; and every few months something strange and difficult to diagnose tries its best to take me out. I may look fantastic in a jockstrap! AND I DO! But my immune system has been compromised for two decades; I have HIV-related dementia (it took me twenty minutes to find the word “dementia”), major fatigue, kidney and liver issues, major anxiety, and a list of countless other things too boring to list—all aggravated and related to stress, or how the wind blows on any given day.

It is not easy.

It takes every ounce of concentration and personal investment just to keep it all together. I know some of us make it look brilliant and amazing…. And you are welcome. Showing the rest would be too scary for most to handle. But no matter how graciously we handle our burden, this body is just a papier mâché project held together with meticulous construction paper and glue. Too much water or too much pressure and it will fall apart.

This we don’t tell you.

This would not sell the pharmaceuticals so easily.

This is the difference between being on PrEP and actually having the disease.

But perhaps we’ve made it look too easy. Perhaps we haven’t posted enough sad stories on our Facebook. Because now the government is asking me to prove something it should already know. AIDS is still AIDS.

Once upon a time we advocated so hard for our infected brothers and sisters that once you were deemed legally disabled from AIDS, you never had to prove it again. AIDS organizations would actually intervene on our behalf and lobby so that AIDS patients were given the extra attention they deserved. But no one has called me back, and the day I was able to make it to my city’s largest AIDS organization, they had no one in the office for me to see. So I don’t know why they were even open! (High blood pressure goes higher as I begin to lose my—)

Breathe….

Needless to say, she is nervous.

I CANNOT take my old broken orthopedic butt back into the working world! Doing one thing a day is usually more than she can handle! I know my Instagram makes it look like I’m living a fantastic life. But ya’ll do know, that NO ONE is telling the truth on the Internet right?! Do you really think that all those pretty young “models” with perfect bodies and teeth are really on yachts in Ibiza every week? Please! Wake up my people! It’s all LIES! THEY HAVE NO TEETH!!

I have diarrhea daily, I can’t extend my elbow, I have individual therapy, group therapy, psych meds, and three doctors appointments this week; but the light coming in from my bedroom window makes me look cute in photos. And trust me, I know my angles.

So as I begin to fill out this form and try to convince the government that I have not been miraculously healed from an incurable disease, I have a simple request: Do not be fooled by how brightly we smile.

AIDS is still AIDS.

Invest in the communities around you. Vote for funding that helps the sick. Know that we are not taking advantage of the system. Trust that your tax dollars are needed and appreciated. And when you see me on the bus stop in a cute outfit and painted nails with my head held high and my imaginary blond curls blowing in the wind, know that like a person fighting cancer, and smiling through chemo, I too am just trying my darnedest to make it to another day. And praying that with just a little more force of good will, maybe, just maybe, I can keep my body from betraying me.

Love and Light


Corey Saucier is an artist and writer living in Los Angeles. He is a Lambda Literary Fellow in Fiction and Non-Fiction and is currently penning his first novel. His musings and wanderings on Love, Life, and Nonsense can be found at www.justwords.tumblr.com.