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When the Possibility of an HIV Diagnosis Is Overlooked

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I want to start off with telling you a little about me, and my story. I started getting sick around 2007. As the years went on, slowly I got worse. More and more infections, being tired more often, mental clarity decreasing. In 2014, I was told I had lupus, even though my ANA was negative. The doctor said it was the “only” logical diagnosis, because all my symptoms matched it. So, I was treated with steroids, anti-inflammatory medicines, and even chemotherapy in a pill form.

I was getting much worse, very quickly. From 2015 to late 2017, I had deteriorated so badly. I knew I was dying. The medicine wasn’t working, so I stopped taking it. I was losing my ability to walk, I was having tremors in my left hand and arm, I was sleeping 14 to 16 hours a day, my hair was falling out, my teeth were falling out, I had sores all over my body, I was coughing constantly and having major sinus issues. At this time, my doctor began to call me a hypochondriac and told me nothing was wrong with me and that it was all in my head. But, I knew better.

November 8, 2017, I went to the walk in clinic. Crying. Screaming. I was fed up. I wanted to know why I was so sick. I knew in a couple months, or less, I would be dead – and for what reason?! I needed answers, and I wasn’t leaving without them. They almost called police because of my actions, and that’s OK. I wanted to let it be known that my medical needs had been neglected. The walk in doctor said to let me in and she would see me. She did a pap smear, and culture of lesions I had on my vagina. They hurt so bad, but I had not been sexually active, so I didn’t know what they were. We did blood work and checked for everything under the sun. I waited nervously for the results.

November 13, 2017, I woke up to a notification on my phone at 8:15 a.m., stating lab results were in. I opened my results, and read in red, “HIV 1 – Reactive, HIV 2 – Non Reactive.”

It was at this time I knew. I was dealing with HIV. I screamed “no” over and over, with massive tears running down my face. I called my mom, crying so hard – she couldn’t understand me. I took a deep breath and screamed “I have HIV!” She said, “Oh no! But, it’s very, very treatable. It’s going to be OK!”  I didn’t believe her. I have always known this to be a horrible disease and an even worse way to die. The last time I had any education was in the early 1990s. Easy to say, I was terrified. When I hung up with my mom, I called my best friend. My best friend came running to my house and hugged me, and we went to the doctor’s office so they could tell me what the next steps were. I haven’t cried so hard in my whole life as I did this day.

When we arrived at the doctor’s office, we went to a room and the walk-in clinic doctor and a psychologist were there. They explained that I am HIV+ and that they are so sorry they didn’t think to check before. I told him I saw my lab results before anyone called me, and that should never have happened. And they greatly apologized for that as well. They gave me information, and scheduled an appointment with the HIV specialist just 45 mins away. And then called in my primary doctor, as she was in tears and felt horrible for treating me the way she did. She came in crying, we hugged and she apologized over and over.

November 16, 2017, I went to the HIV specialist and had more lab work done. This was the most nervous I had been in my life. I didn’t know what to expect. She asked me lots of questions, did an exam to see my issues and told me it was typical. I was also told I would be seen again in two weeks for results of labs and course of treatment. I was honestly worried I wouldn’t live two more weeks. But, I did. Barely.

November 30, 2017, I had returned to the HIV specialist to review my lab work. This is the hardest thing for me to write, because it was the worst thing I had ever heard, and I thought hearing I had HIV was bad enough.

I had a CD4 of 30. CD4 is a test to tell you how many T cells are left in your body. T cells are what fights off viruses and infections. A normal, healthy person, usually has over 1,000. I had 30. I couldn’t fight off anything.  And on top of that, anything under 200 meets the criteria for AIDS. AIDS! I was told I had AIDS. I thought for sure I was dead. I screamed. I cried loudly. My mom was on the phone listening the whole time on speaker. She was in shock. She didn’t know what to say. The Doctor hugged me. And told me, I can make a turn around and that I would start a new medication the next day. I did just that.

December 22, 2017. I woke up, my cough was gone. Gone. I didn’t hurt as bad. I had energy. I felt good. Better than I’ve felt in years. I knew, at this moment, the medicine does work. It had been working. While I was sleeping for the last 22 days, it was working on killing the virus. My skin color was coming back. I wasn’t grey! I knew, for certain, I was going to live. Because every day up to this day, I would pray as I fell asleep to keep me alive and let me beat this. Do you know how long 22 days is when you’re afraid you’re going to die every time you go to sleep? I do.

Today, it’s April 18, 2018. It’s now five months later. And let me tell you HIV doesn’t have me. I have never missed a dose of medicine. I changed to a plant-based lifestyle of eating and added elderberry, hemp hearts and essential oils in my daily life. I am doing Yoga. I am pain-free, and HIV-free. The virus will always be in my body, but it is now so low, that it is not detected on a test.  It’s called being “undetectable.” Today, the medications are amazing. Very little side effects, if any. I personally did not experience any side effects from the medication they put me on. And it worked fast. I am now full of energy, my hair is growing back very well, my skin is cleared up, and I feel great!

What I want to tell you – don’t be scared to get tested. It’s so much better to know early and be treated. It’s better to keep it under control so you don’t progress to AIDS and don’t have permanent damage to your body. It’s one pill a day. That’s it.

Take care of your body. It’s the only one you have. Go get tested, please. Bring a friend and have them get tested too. Don’t let it go and get as sick as me. Don’t let it go and spread it to others. You matter. Please take care of you.

Thanks for reading my story – I hope I can help save someone else by telling my story.

Originally published: April 19, 2018
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