HIV Long-Term Survivors Awareness Day

Jason’s Story

Being a long term survivor of HIV has been somewhat of an emotional rollercoaster. Back in the 90’s, a diagnosis of HIV was met with uncertainty and fear; stigma and judgement. I had existed with a false sense of security, that “tops don’t get HIV”. Back in the days of the epidemic, before PREP and way before much less toxic meds (or any meds for that matter), people were put into categories as it pertained to HIV. “bottoms” and “tops” had much different levels of risk and this caused people to walk around in denial. As the always “active” person in my sexual experiences, I was completely distraught when I got this positive diagnosis. Not only was I in shock, but because I hadn’t gotten tested even once from the time I became sexually active it allowed this virus to ravage my liver and my T cells as well.  I had almost no t cells to speak of by the time I was told I had this horrible virus, because of fear and ignorance. To make a very long story short, I have lived through a time where getting HIV was not only uncertain, but whatever treatments there were, had extreme physical and systemic side effects. So, even if you managed to find success in a drug like DDI (Zerit) or Crixivan, you needed to take upwards of 30 pills daily, while watching your face disappear and your body become overly vascular, making you an easy target for peoples’ judgements. My path was uncertain, as many of these treatments I had resistance to. Only after more progress was made in science did I manage to find something that suppressed this virus, increase my T cells and get me to that proud and desirable term of “undetectable”.

Today, there is so much more education as well as way less toxic treatments. Science has also discovered that folks whi maintain undetectable viral loads can’t even transmit this virus through sex. Combine this fact with folks who don’t have HIV, being able to use Prep as a prophylaxis, and you have a much more confident landscape for people grappling with this once HORRIBLE diagnosis. The stigma has lifted to a large degree and the quality of life has done a 180 for folks either living with HIV as well as those who want to prevent ever getting it!

1. Would you please help us to understand your experiences with mental health, specifically in what ways have these experiences changed or impacted your day to day life in a negative or positive way

My experience with mental health rooted back to childhood trauma. As a child, your brain is a sponge so you think that the things that are happening to you are “normal” and “okay”. As you start to get older, you begin to question what had happened and you are essentially learning that what had happened was traumatic, and most children do not experience that. At the same time, I have met people who have experienced the same trauma as me and for me that is therapeutic. I have anxiety and PTSD. I still continue therapy today and I am on anxiety medication. I cannot imagine where I would be today without these interventions.

2. Have you encountered any obstacles related to your mental health needs or having the professional or group support you rely on?

The one obstacle that stands out to me about my mental health is when I would be seeing a therapist for a year or so and then they would leave their practice, or my insurance was not accepted anymore. It was frustrating to have to retell my story to a new therapist multiple times. I felt like my experience started to not mean much to me because I was just giving my therapist the “run down.” But, I would say it was somewhat of a blessing because it made me more comfortable in speaking about what had happened in my childhood.

3. Have you found others misunderstanding or devaluing what you can do because of mental health needs?

I find that sometimes people assume that the way you carry yourself in public or if you are successful, that you are “perfect.” I have been told multiple times by people that they never would have expected me to tell the story I have. There is no face of mental health.

4. What was a turning point in your life, and what are the most important things you have learned or changed that are responsible for a better quality in your personal /professional life and stable mental health?

I knew I had to go to therapy at the age of 17 when I was so depressed, I started to think of ways I could kill myself if it “got really bad.” Those thoughts terrified me. I began going to therapy to process the trauma.

One specific memory of my anxiety that was difficult was when I got the call that a family member was terminally ill. I had gone in the bathroom and had a panic attack on the floor. I could not breathe and I started to feel faint. I had called my roommates in the bathroom because I knew I was going to have a medical emergency if I did not. I recall not being able to pick my head up, my whole neck was numb. My eye sight started to go as well. This moment made me realize that my anxiety almost caused me to pass out. That was my low point. I felt so out of control. Anxiety can be a health concern.

5. This is a double barreled question: In what ways have you experienced others misunderstanding mental health needs in daily encounters and what would you tell them? What person or resources helped you the most to reach your goals, manage mental health symptoms, and be accepted as a full person?

A big misunderstanding about mental health, anxiety specifically is when I am about to have a panic attack or I am crying and somebody says “stop crying.” Would you tell a person with pneumonia to “stop coughing”? I understand people may be trying to help, however it almost puts you down and it feels like your emotions are not being validated. The support from my friends has helped me to feel like I am not being judged. I have facetimed friends mid panic attack, and they have been able to help me get through it by telling me to breathe and really talking me through the situation.

6. Describe your experience from the most difficult to a good quality of life in managing your symptoms with medication, therapy, or self-help?

Like I said before, I go to therapy and am also on anxiety medication. At first, I was not on my anxiety medication. I decided to go on it when I felt extreme anxiety in college. I actually had a panic attack in the locker room before I had to take a swim class. I felt paralyzed and refused to step foot into the pool area. My therapist at the college was able to speak with the deans and they waved me from taking the swim class. For some reason, being in my bathing suit in front of a bunch of class mates really triggered me. I am beyond grateful to the college for making accommodations for students like me. It was after this moment that I decided it may be a good idea to go on medication. I never wanted to feel so paralyzed by my anxiety again. Now, if I feel an anxiety attack coming on, it stops in its track. I feel like the medication is really working in the sense that my anxiety is not as bad as it used to be.

7. Would you please tell us about your work life and any concerns you had with managing mental health symptoms?

Working in the health field, I found that I would get anxious playing out particular scenarios in my head and what would happen if a patient did this, and what I would do. I would find myself staying up at night running these scenarios in my head. One thing that has helped me is speaking with my therapist and having her tell me the definition of anxiety. Anxiety is the fear of the unknown. I am not my thoughts. Another thing that has helped me is a grounding technique. When I find that my mind is racing, I ask myself two questions. They seem funny. Where am I? Where are my feet? This helps my mind to come back to the moment and to manage my anxiety.

8. Were employers and workers a help or hindrance to you in seeking a stable life with employment?

A lot of my peers in the health field have been helping in speaking about patient experiences and working through stressful patient situations. I am thankful to say that I have only had support by my peers and never felt it hindered a stable life of employment.

9. What is a good day for you?

I have had a lot of good days recently. With the pandemic, I feel like it made me more appreciative of what I do have and to not “sweat the small stuff.” Many of people are dying each day, and I am alive. Let’s make everyday a good day.

10. Did we leave anything else out that could help us understand the experience of persons living and managing mental health symptoms

I think as a society, we need to normalize therapy. Sometimes if a friend asks me to make plans and I have a therapy appointment, I say “I have the doctors.” I don’t feel 100% comfortable saying “I have a therapist appointment.” I think if mental health starts to become normalized, I would feel more comfortable in speaking about going to therapy.

View our interview with K

View our interview with Izzy

Hey, I’m Joe –
A 65 year old Italian American man living on Long Island. Having lived in NYC for a long time, I relocated to Suffolk County 27 years ago shortly before being diagnosed with HIV. I don’t drive which can be a struggle getting around, but I have managed to make it work. I have reinvented myself in recent times, and currently work within the HIV community as a peer mentor. I began taking medication for HIV when I was first diagnosed because I was dying. I was comfortable being a guinea pig and volunteered to participate in a clinical trial study for an antiretroviral therapy (ART) drug going through its final clearance. I was motivated to help others like myself in need of this life-saving medication, regardless of whether or not it would actually benefit me. At one point I was very ill, and thanks to my medication, I’m not. I’d like to keep it that way, and the funny thing is that HIV is the least concern of my health problems.

Living with HIV has historically been portrayed in a negative and somewhat stigmatizing way. To me, the U=U movement injected positive messaging; a much needed change for the HIV community. U=U stands for undetectable equals untransmittable, which means that when I take my ART medications the way my doctor prescribes, I’m unable to transmit HIV to others sexually. That fact is very important to me. The first medications I took were hard on my stomach in the beginning, causing some nausea and heartburn. Fortunately, I didn’t experience many of the side effects mentioned with the new medication I’m currently taking. In the 25 years that I have taken my medication, it has gone from being difficult to being very simple. I went from 6 pills a day to just one pill a day! I do miss a dose occasionally but overall, taking my medication has become a habit which I am thankful for. For me, taking ART medication was not an option— it was the last best hope!

View our interview with Jamie