My HIV Story: I Refused Medication to Treat My HIV

*The following narrative is from one of our HIV-positive scholarship applicants. It has been minimally changed to remove any identifying information. Italic words within parentheses were added by the editors to make the original essay clearer.*

Living with HIV is nothing cute, some days are better than others, every day that black cloud hangs low over my head with the thought of  “ when will my final day come”? If I only had to deal with just living with HIV, I may not feel so overwhelmed, however when you mix in being molested at a very young age, being placed in special ed from 3-12 grade, coupled with the fact my education level is low because of my learning disability, count on more bad days then pleasant.  

I first realized I had HIV in my final year of high school, my body begin to just do weird things while I did not take a HIV test until 2 years later I already knew what the outcome would be. The one and only guy who I was sexually involved with was a heterosexual male,  a heterosexual transmitted the disease to me. For some reason I felt that was truly unfair. Heterosexual? I never confronted him and he moved out of state. Looking back on the guy who molested me, it was this year when I really felt I should speak out, and I got the courage from the “me too” movement. Every time I become depressed, overwhelmed I often think back on, had my life been different, had these two heterosexual not molested me, and transmitted that deadly virus.

There is no break, its medication daily, coupled with side effects. It’s up to you, you must learn your body, learn the food that will upset your stomach, the most embarrassing thing I deal with is, I often carry around napkins in my car, due to the fact sometimes I can’t hold my bio-move (bowel movements) and many times I don’t make it to a restroom. Sometime I have had to go in an alley behind a supermarket, park, just anywhere.  This is why having this disease is no fun; I would not wish this disease on anyone.

My aunt passed away from HIV due to the fact she would not take her meds, and she felt that God had delivered her from HIV, therefore she said no meds, and shortly thereafter aunt Janet’s* health went downhill fast.

The one good thing I have in my favorable is African Americans guys, supposedly do better on these meds per my physician. He also indicated the medication I take is the same kind Magic Johnson is taking? I’m thinking to myself ..”wow what a consolation“  

I could not even tell my mom, I felt she would be so hurt.  I only had disclosed the bad report to my mom about 8 years ago (keep in mind 1987 is when I contracted HIV). However I think she already knew due to the fact she attempted to get life insurance on me a few times however those policies would come back declined, but of course not disclosing the reason but I knew.

The scary thing was living through the 1990s, having HIV was somewhat in the early stages along with the medication AZT, which was the only HIV medication. I advised my doctor I was not going to take that medication period.  People were dying on that medication. Their condition appeared to get worse, there was so much bad press about AZT, my doctor recommended I take the medication, I said NO, I felt like killing myself, because my T-cell count was low, I had not told my parents I was HIV positive because so many people died on that medication. I knew it would tear my mom heart out if I told her during the 1990s. Everyday almost every second of my life I thought about being HIV positive and when will I die. I changed my diet, started to exercise, pray everyday. When I got my results from my T-cell count it was 550.

As the years passed with my symptoms getting a little worse, I was finally put on meds in 2005. It’s tough living daily with HIV the pain, the side effects, the shame, the medication, all makes for more unpleasant day. Just knowing every day you have to take medication daily for the rest of your life. 

Remaining consistent and not missing your meds is a must. Because missing and infrequent doses can cause your immune system to become resistant to the medication, therefore the meds will no longer working, and you will have to change your medication, and new medication comes new side effects. Therefore you learn quick to never miss taking your medication, and sooner than later you enjoy consuming that sirloin steak, that has the taste of three chalky tablets.  

You never get over living with HIV your self-esteem is sometimes low, you sometimes feel worthless and inadequate.  Trust me those are the time you have to tap into your faith, and higher power to get you through those tough days. As I previously mentioned if it was just HIV, I would not feel so overwhelming, however the basis things people take for granted like having a job, I could never land a good paying job because of my learning disability, and all jobs I had was entry level with easy tasks. But I still press on, because I know.. “All things are possible and every river is crossable”.  I continue to do my part by educating others on the importance of condom use.

While everyone never believes me when I tell them I’m HIV positive, because I take well care of myself not to appear weak. I also tell them you only see the outer appetence (appearance), but inside there still is pain, and I feel my bones get weaker. No matter what, I still continue to move forward; because I know success is yet around the corner. The ability to demonstrate a can-do-attitude even in the face of adversity keeps me strong. Therefore I keep the upbeat demeanor daily because I’m often told my good attitude puts others in a good workflow.

When it comes to my grammar, I’m aware it’s not the best.  However, you always get an “A’ for effort. Therefore how I feel living with HIV, how this disease has affected my life, and what I want those without HIV to know, is clearly stated and humbly submitted in my letter. 31 years living with HIV, and I still “choose” to make a difference. Because I know the meaning of the word, “choose” – pick out or select (someone or something) as being the best or most appropriate of two or more alternatives, and I choose ..”Life.” Not celebrating 31 years of HIV, however every day I thank GOD for keeping me strong and letting me live just one more day.

* = Names were changed to keep identities anonymous