What I want you to know about living with HIV

What I Want You to Know is a series of reader submissions. It is an attempt to allow people to tell their personal stories, in the hopes of bringing greater compassion to the unique issues each of us face. If you would like to submit a story to this series, click here. Today’s guest post is by Matt.

I had a fever of 103, sore throat, sweaty from my feet to my head, achy all over, bed reddened, and exhausted. I went home for Thanksgiving and still had all the symptoms so I went to the nearest clinic and they prescribed me ZPak. The fever finally broke but my stomach began to hurt and my skin was irritated all over. I thought I was allergic to the Zpak - This was a nightmare.

Finally, I went to Northwestern Medical Clinic and the doctor told me to take allergy pills and put some cream on the rashes but that didn’t help. For the next couple weeks, I shrugged off the irritated skin, stomach issues and just changed my diet, cleaned, did my laundry more often, and paid attention more to my daily habits. As much as I paid attention and changed my habits, I continued to have the irritated skin and stomach issues. I couldn’t hold anything down.

Finally, I gave up and made an appointment with a Physician to have a check up and he asked, “If I wanted to get tested for HIV?” I automatically said, “No!” out of panic. I was scared that I might have HIV and from all the negativity I hear about it, that is the last thing I wanted to have. I also told myself a long time ago, that if I ever get HIV, I’d have to commit suicide. Finally, my doctor convinced me, he said, that it has progressed since the 80′s and you will no longer die from the virus and the treatment has come a long way. So I got tested for HIV and wouldn’t hear back for a few days.

I remember sitting at work with a lump in my throat waiting for a phone call from my doctor to see if I was living with HIV. I could barely breathe; my voice was shaky, and I was about to have a panic attack. All I could think about is my family can’t see me like this. He called and my blood work came back inconclusive and I had to schedule another visit to draw more blood. I was a wreck and I couldn’t even focus – I was sad, angry, and unstable. I knew if my blood work came back HIV positive - I had to commit suicide. I went to the doctor that evening and had 8 tubes of blood drawn from me. I remember my doctor telling me, I will live a long and normal life and there was no reason to commit suicide.

On December 28, I went to the doctor’s office to find out my results and it came back HIV Positive. I put my head down and cried. I never thought this would happen to me. There I was crying hysterically as Seth (my boyfriend) held me. My thoughts began to flutter:

“What will I tell my parents? What about my health insurance? How will I pay for my medicine? What happens from here? When will I get the medicine? How does all this work?" 

My thoughts fluttered…

For the next few months I settled into to being angry, sad, nervous and not sure how to tell my family and friends. I spent many days at home laying in bed and taking many days off of work while seeking treatment with a Doctor at Northwestern Medical Group. I gave blood to determine where my white blood cells (they fight against anything that attacks the immune system) are and how much virus is in my body. I found out my white blood cells were very low and there was a substantial amount of virus in me so my doctor would soon prescribe me Antiretroviral Drugs. The Doctor prescribed me Stribild so I went to pick it up at the Walgreens and without notification I would have to pay $900 with my Health Insurance. I went back upstairs and told her that I couldn’t afford the medication so she gave me a Gilead Drug Assistance Card. The card would give me a $400 discount and the cost for the Stribild was now $500 – I still couldn’t afford it. This began a long process of seeking treatment.

After jumping around to various HIV Healthcare Facilities I arrived at University of Chicago to seek treatment and finally got my medication covered 100 percent. I started medication and still continued to have stomach issues, which would result in me switching to the Antiretroviral Drug Complera.

Through this whole experience, I had the idea of coming out HIV positive and running the Chicago Marathon to raise money for HIV/AIDS and blog openly and honestly about living with HIV.

On March 2nd, I decided to come out HIV positive and talk openly about my status via blog. This began a new journey, a journey that allowed new people into my life and pushed some people away. This hardest part was not having the support from my own family when I was dealing with symptoms of the virus. For 2 months, I wasn’t talking to my family and had to quit my job because at this time I was working with my family. I had to put all that behind me because I needed to stand tall and give back to people living with HIV/Aids because I was once judging and throwing stereotypes at them.

This whole experience has changed my life forever. The experiences I have had with sharing my story has encouraged people to talk to me about their HIV status, encouraged people to ask questions and to give others hope. Sharing my own life story goes beyond me, it is simply about living my life openly and honestly to give others hope and belonging. This has given me the opportunity to uncover my sexual abuse, depression, suicide, alcohol abuse and financial instability and by speaking publicly about these struggles it will allow others to stand witness of their own struggles. Like Brene Brown says, “Owning our story can be hard but not nearly as difficult as spending our lives running from it. Embracing our vulnerabilities is risky but not nearly as dangerous as giving up on love and belonging and joy-the experience that makes us the most vulnerable. Only when we are brave enough to explore the darkness we will discover the infinite power of light.”





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