AIDS Adrianna Suleiman

My topic is AIDS. I only had one interview. It was with a guy who has had AIDS and he talks about his experience with it.


When did you first get HIV/AIDS? I was diagnosed on as being HIV+ on July 13, 1998. However, based upon the level of virus in my body and the deficient immune system at the time doctors believed I had been living with it for nearly two years.


What was it like you you first got infected? Looking back now, I can see when I became infected. A few weeks after contracting the virus, I came down with what appeared at the time to be a very bad flu or cold. I was in bed sick for 7 days, probably the worst I have ever felt in my entire life, the process is referred to as seroconversion, which is when the virus takes hold in your body and begins to replicate while attacking your immune system.





Were there medications or infromation availiable? The time period when I was diagnosed luckily coincided with the early days of the antiretroviral therapies, or the "cocktail" as it was called back then. It took a few months to find out just how much of the virus was present in my body and begin treatment. I had virtually no immune system at that point, living with a mere 8 T-Cells (CD4) and close to a million copies of the virus present in my body. Despite the dire numbers the doctors presented to me, I felt relatively okay. I was experiencing some fatigue and loss of appetite, but I attributed it to the stress of a new job and becoming a father around the same time. There were some very significant changes going on in my life at the time that challenged me at times, but I believe those same challenges actually helped me to cope with my diagnosis and push forward with life. The medications that I began taking were a pretty extreme regimen, I was taking 37 pills a day to combat the virus and any potential illness related. I would have to set alarms throughout the day to take the medication at specific times, starting as early as 5am every day. The side effects were not as severe for me as they were for others, but I still had my fare share. I am thankful today that I had those drugs though, my first HIV doctor told me I would be lucky to live 6 more months; it's been almost 12 years now. The doctor that told me that died 3 years ago and I'm still here to tell my story, so I cherish every day as best I can. They knew so little about how long persons with HIV would live on the new medications, but it was the first time since the start of the epidemic that the death rate for HIV/AIDS began to decline. I feel fortunate that my diagnosis came at that time in medical history or I would likely not have become a long-term survivor.





How did you cope with it? Taking the medication was the only way to fight the virus aggressively, so of course I did that. However, that does not prepare you for the psychological aspect of such a diagnosis. I focused a lot on my then newborn daughter, she has been tested over the years and does not have the HIV virus, nor does her mother. Having a new baby in the house brought so much joy and thought of the future it really drove me to do everything I could to live well with HIV. I began seeking counseling, taking education classes to understand the virus and how it was impacting my body, I changed my lifestyle in many ways also. I quit smoking, drinking, and in general not taking care of my body. I sought nutritional counseling and found a peer support group that matched me up with someone who was living well with HIV. I also took some metaphysical classes, practiced alternative therapies like visualization, meditation, and spiritual exercises. I read everything I could about anyone who was doing well with HIV and tried to bring it into my life in some aspect. I have continued to practice much of it throughout the years, most important realizing that a holistic approach to my wellness as an individual and as someone living with HIV was critical to my success. I also had tremendous support from my family, my wife at the time, and friends all around me. To this day I make sure to recognize the importance that their support has played in my managing HIV so well. I currently have close to 600 CD4 or T-Cells and the virus has been at the "undetectable" or below for over 10 years now (undetectable is the desired status for how much of the virus is present in your system, typically that would be 50 copies or less). Looking back I feel I did well and made a strong effort, but there were definitely some hard hills to climb. Nothing can possibly prepare a person for the emotional and psychological ups and downs. I went through some periods of depression, attacks of anxiety, and tremendous stress. I did take additional medications for those issues for a couple of years until I got over the toughest part. I facilitate a support group for persons who are newly diagnosed/dealing with HIV and the most common feeling in the beginning is that of being dirty or somehow less valid as a person. Many people, myself included, go through a period of time where they feel that no one could ever love them again and that all those that had cared in the past would turn away. Luckily, that is not the case and those feeling pass, but it's a pretty tough journey. I have since divorced the woman I was married to at the time, but not because of HIV. Having dated over the years since the divorce I have had to address some of those feelings again. Most of my dating experiences have been pretty good regarding HIV, most that I have dated were comfortable with my status and embraced me. There were a few that did not though, I had been a few dates with an individual back in 2005 and when I disclosed my HIV status the response was "oh, wow! That's awful, I'm so sorry. I don't think I can continue you to see you though, I would be afraid of dying every time I touch you". That was tough thing to hear, but I have long since realized that we all have our own opinions and right to choose. I respect that and now before even asking someone out on a date I disclose my status to avoid any such situations. I am very comfortable with being HIV+ at this point, I have lived with it so long. I would be lying if I said there was not still quite a bit of stigma attached to the virus and anyone living with it, but I've learned how to process it all in a way that works for me and has minimal impact on my self image, it is important in my opinion to always respect and value who you are regardless of the circumstances of ones own life and the way others perceive it.





How do you cope with it now? I think I answered this in the previous question, but in short - I love and respect myself, I know that I have something to offer in life, I empower myself with knowledge, and surround myself with others who feel the same. I actively educate myself as the understanding of the virus and treatment evolves, I share my story with others and speak out about life with HIV whenever possible. I have found that for myself to cope with it well, I must embrace what I can not change. I am not solely defined as an individual by my HIV status, but it does play a big role in my daily life. I see the doctor often, I constantly look at ways to improve my quality of life, and I have done what I could to reverse some of the physical side effects of long-term drug therapies for HIV. I did experience some facial wasting, or lipodistrophy, from a medication I took for about 6 years. I lost a great deal of the fatty tissues in my face, which resulted in having a very gaunt look or what some call "AIDS Face". I underwent treatment this year to reconstruct some of the loss. There is now an injectable filler called Sculptra that stimulates the collagen to grow back in the areas where it is lost. For myself that was the cheeks and temples, very visible areas. I had to have 6 treatments that cost about $750 each. I would spend an hour in the doctors chair having countless needles stuck in my face to inject the solution. It was quite painful at times, but the results are well worth it. I no longer feel as though I look like someone with HIV/AIDS.





Did your relationships change with your family and loved ones when they found out your status? Yes, it changed a lot. My diagnosis actually brought me much closer to my family, they stood by me with tremendous support and helped in any way they could. I have no way of ever being able to measure just what that did for me. I am extremely grateful that they were there for me.





Was anyone else you knew suffering from the illness? At the time I was diagnosed I knew a few people with HIV, but not many that I was close to. Today I could not even count the friends I have living with the virus. I am very active in the HIV community, I travel to various conferences throughout the year to educate myself and others. All of it has resulted in meeting some amazing and inspiring people. I have often said that HIV has actually brought many great things to my life, including friends, relationships, and an appreciation for life that I doubt I would have ever had otherwise. That being said, if there were a cure tomorrow I would be at the front of the line.





How would you compare HIV/AIDS from when you first were diagnosed to now? The medications and management of the disease has tremendously improved. Like I stated prior, I took 37 pills a day for the HIV at one point and I don't know how many others to combat side effects and emotional issues related. Today I take only 1 pill for HIV and I have long since stopped taking anything for side effects. I am healthy and happy in life, it just happens to be that I also have HIV. I actually catch colds or flu bugs much less often than most in my family and circle of friends, which I attribute to my actively trying to live as well as possible.