Join Us To #StopHIVTogether During National HIV/AIDS and Aging Awareness Day to #StopHIVStigma

In honor of National HIV/AIDS and Aging Awareness Day, I’d like to share my own personal story with you about how AIDS has impacted my life and that of my family. More than 1.2 million people in the United States alone are living with HIV, and approximately 45,000 Americans become infected every year. Even with all of the information and education available, there are still approximately 1 in 8 people living with HIV that do not know they have it.

The Beginning of the Epidemic

I remember 1981 as though it were yesterday. I was a freshman in high school with wide-eyed innocence about the world around me and making big plans for my last four years of school; dreaming of what my future would be like. I didn’t know that those four years would bring about some of the most life-changing experiences I’d had to date. The birth of my baby sister, and then later that same year, the death of my beloved nana and then my granddad.

By year’s end, a total of 270 reported cases of severe immune deficiency among gay men had been reported, with 121 of those individuals dying. It was the beginning of a disease with epidemic proportions, but at the time it was viewed as an epidemic limited to gay men. What they world did not know, was that this would change, and change quickly. In December 1982, an infant who received a blood transfusion was diagnosed with AIDS, along with 22 other infants that had unexplained infections.

Ryan White Convinced Me to Get Tested

I remember the case of Ryan White, a teenager just like me who lived in Indiana. He contracted AIDS through contaminated blood products. I have to admit, it scared the living daylights out of me. What if something happened and I needed a blood transfusion, or my parents or my siblings? Would any of us ever be safe again? I started reading up on the subject, finding out everything that I could about AIDS. Hearing the news reports every day with the spread of the epidemic reaching every nation in the world, really made me stop and think.

I went to my doctor and I got tested. For my own personal peace of mind, I wanted to know, before I got pregnant, that I had a clean bill of health, which I did. The next 25-30 years were relatively uneventful and with only two partners in that time period, I didn’t worry about AIDS impacting my life or my family, until 4 years ago.

I’ve traveled to various other states, have friends scattered around the world, but it wasn’t until we moved to our current town that I actually met someone who has HIV and learned first-hand what it’s like.

Our Personal Experience and Family Friend

I would like to introduce you to Shawn. I’ve known Shawn for 8 years and he has literally become an extended family member, a “brother from another mother” if you will. Always hamming it up for the camera and being silly with my boys, his “adopted nephews” as he calls them.

shawn

Shawn was just 21 years old when I met him. He worked two jobs, had his own car, and lived with his grandfather and his wife to help care for his grandfather and help with the bills. He had a social life outside of work, and has always been quick with a smile or a helping hand to anyone in need.

Over the years, Shawn became a part of our family. He’d come over for dinner or just to hang out and watch television, or to just be a pain in the butt and disagree with everything and anything that hubby would say! Whether he was here for a moment or for an hour or two, he always made sure that he left us laughing.

Shawn and I bonded because of our shared history of seizures and several similar triggers. We offered each other advice and when one of us was out of commission for a few days because of the seizures, the other would check in and make sure that we had what we needed.

The beginning of 2012, Shawn’s seizures started to become more frequent. He was having several a week instead of a month, and he appeared to be run down and just drained a majority of the time. Due to his health, he had to quit his job. Shortly after leaving both of his jobs, Shawn was hospitalized after a particularly bad bout of seizures that happened back to back in just a few short hours.

Everyone who knew Shawn figured he would be back within a day or two, just like he always was. Unfortunately, Shawn slipped into a coma in April 2012 when he was being transported to the hospital for what we all assumed were just some severe seizures.

Shawn was in a coma for several weeks, and the doctors had told his immediate family that they needed to start preparing for the worst, and to make funeral arrangements. Shawn was not recovering, he was getting worse, and the doctors were at a loss as to what else they could do for him. He had acute bacterial meningitis that had spread to his brain and spinal cord.

The team of doctors caring for Shawn warned his family that, if he did manage to survive the meningitis, he would most likely have brain damage and long-term complications. Issues such as vision loss, mental retardation, hearing loss, paralysis and possibly lose the ability to speak as well.

It was at that time that they also informed Shawn’s family that he had the HIV virus and that, if he did make a recovery from the meningitis, at most he would have another two years before the HIV developed into AIDS and his immune system deteriorated beyond their assistance.

Approximately a month went by with Shawn being in a coma, when he began to show signs of improvement. His vital signs slowly improved, and he eventually was able to open his eyes. Unfortunately, he was completely blind and had lost the hearing in his left ear. He was unable to walk or speak and had difficulty remembering who people were and where he was.

Fast forward about three months, and Shawn was released from the hospital. His vision had returned somewhat, and he had undergone intensive physical therapy to learn how to walk and talk once again. He went through several months of weekly visits to the optometrist to restore his sight as much as possible and painful injections to both of his eyes.

We are now 4 years post-diagnosis, and Shawn is living his life with minimal complications. He takes the regime of HIV medications prescribed by his physician twice a day, and he is extremely cautious to stay away from anyone who may be ill or have a cold, and washes his hands constantly.

You would never know by looking at him that he has the HIV virus. He’s had his good days and his bad days, but being able to work through the various stages of denial, anger, grief, and finally acceptance have left him determined to survive and to keep his levels up so that the HIV virus does not become AIDS. He wants to lead a long and happy life, and I have every faith that he’ll be able to do just that.

HIV Among People Aged 50 and Older

Shawn was just 25 years old when he was diagnosed with HIV. However, people Shawn’s age grew up aware of HIV and AIDS, were educated by their teachers and their physicians about the dangers and prevention. Older people in the United States are more likely than younger people to be diagnosed with HIV infection. Usually they are not diagnosed until late in the course of the infection and can suffer more immune-system damage.

Health care providers may not test older people for the HIV infection, and the over 50 population may not even consider themselves to be at risk or mistake the symptoms as normal aging and not even consider that HIV could be a cause.

  • Older people who are widowed or divorced find themselves dating again and are sexually active. The have the exact same HIV risk factors as young people but may lack the knowledge on how to prevent getting it.
  • Women who no longer worry about becoming pregnant may be less likely to use a condom and to practice safer sex. Age-related thinning and dryness of vaginal tissue may raise older women’s risk for HIV infection.
  • Although they visit their doctors more frequently, older people are less likely than younger people to discuss their sexual habits or drug use with their doctors. And doctors are less likely to ask their older patients about these issues.

Check Out The Testimonials

If you have a friend or family member who is age 50 or older, have a frank discussion with them about the facts on HIV among people aged 50 and older from the Centers for Disease Control and Prevention.

How You Can Help Spread Awareness

Let’s face it, even now, in 2016 when you’re introduced to someone who has the HIV virus or AIDS (they are not the same), you worry if you will somehow “catch it” from them. Look, HIV is not spread by hugging, shaking hands, sharing a toilet, or sharing dishes. You can’t get HIV from eating food prepared by an infected person. It isn’t spread by mosquitoes, ticks or other insects.


I am lucky to have had the opportunity to learn first-hand from Shawn. It has enabled me to educate my husband and my children about the HIV virus and AIDS. Through our honest discussions and the multitude of questions he has been willing to answer for me, Shawn is treated like any other guest or family member in our home. We want to enable you to treat others with HIV/AIDS as we have learned to treat Shawn.

This post is made possible by support from the Let’s Stop HIV Together campaign from the Centers for Disease Control and Prevention. All opinions and statements above are my own. You can help support the campaign by joining us on Twitter, Facebook, and Instagram and sharing your story. Together we can #StopHIVStigma and work towards a common goal to #StopHIVTogether.

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4 Comments

  1. What a GREAT post! Thank you for sharing and I hope your friend thrives for many years to come. I ended up getting to talk to Cynthia, whose video you featured, as part of this same campaign. I only wish we had been “in person” instead of on the phone; she does so much to educate aging ppl about HIV. She certainly educated me!

  2. Thank you for sharing your personal experience with us. It is a terrible disease and the more information you have the better you are. So thanks again.

    • Thank YOU Renee for taking the time to read it all! I really have a LOT more I wanted to say but I didn’t want to lose anyone who decided to stop and read it! Will definitely be sharing more over the next several months!

THANKS FOR TAKING THE TIME TO COMMENT. WE APPRECIATE YOU!