HEALTH MATTERS
By Sarah Meadows
This is the last in a series of true-life stories of those diagnosed HIV-Positive, and how it affected them, their families, and their lives.
For most of us, HIV is something that belongs to somebody else – to “them,” not us. So we are hardly aware of the emotional and psychological trauma, the family stress, the social rejection, and the financial hardship that accompanies an HIV-Positive diagnosis. For Frank, it hit him very hard….
Frank is a heterosexual HIV-Positive in his mid-thirties. Born and raised in Canada, he recalls being a little “chubby” when he was small, but grew into a handsome, athletic young man. Unlike the rest of us, his biggest problem in childhood was not his parents. It was a disease he was born with: hemophilia.
Hemophilia is inherited from the mother, passed on in the X-chromosome. A male has one X-chromosome and one Y-chromosome, while a female has two X-chromosomes. If one of the female’s X-chromosomes is defective for the gene responsible for blood clotting, she herself will probably not have hemophilia. However, since a male receives his single X-chromosome from his mother, the son of a healthy female silently carrying the deficient gene will have a 50% chance of inheriting that gene from her, and with it the disease.
This was the case with Frank. At birth, there was some hemorrhaging in Frank’s ears, so they did a blood test and discovered his disease.
The Y-chromosome in men has no gene for the production of factor VIII or IX, which is responsible for blood clotting. Therefore, if a man receives an X-chromosome from his mother that is defective for these factors, he will have no genes at all to produce factor VIII or IX. And without factor VIII or IX, the blood cannot clot and therefore a hemophiliac can bleed to death with even a very small cut.
As a result, hemophiliacs have to be injected with factor VIII or IX on a regular basis – every three or four days – for their entire lives. It started for Frank as soon as he was born. For the first ten years of his life, he either went to a hospital to get his injections, or his mother did it for him at home. When Frank was old enough to learn how to safely stick a needle into his veins, he started injecting himself, as he will do for the rest of his life.
“I had some self-esteem problems when I was young because of my hemophilia, and I really wanted to look and feel as good as I could,” Frank admitted. “To me it was a manageable disease, and I didn’t have much trouble learning to cope with it. I guess you could say it is somewhat like diabetes, but of course the treatment is much more invasive.”
If a hemophiliac doesn’t get his factor VIII injection on time, symptoms can appear in addition to the danger of bleeding to death. Hemorrhaging can occur in joints, such as an ankle or a knee, and cause pain.
“If you are in good health and you follow your injection schedule, you should be okay. But factor VIII doesn’t last; it gets flushed out of the system in about three days. So if you don’t happen to be near your refrigerator, or miss your injection schedule for some reason, you can suffer tremendous pain. Some part of you could swell, or you could get a cut and not stop bleeding. You have to be in constant vigilance and stay close to your factor source.”
Virtually none of Frank’s classmates or playmates or friends ever knew Frank was a hemophiliac. There was no reason to tell them. Frank would simply take his injections privately twice a week and then go about a normal life. But inside, it affected Frank emotionally.
“In terms of relating to other people, it’s always there, hidden beneath the surface. It’s frustrating. As a kid, I always wished that they would develop something better than the treatment I was taking so that every three days I wouldn’t have to have an injection. I felt that life was tough enough without this. It seemed to me that the treatment was very primitive, that there should be some kind of genetic solution rather sticking a needle in my arm. So I kept waiting for a treatment breakthrough that never came. But it isn’t the worst of illnesses, and it’s something you learn to deal with over time. Since it doesn’t show on the outside, no one would know I have it.”
In fact, Frank didn’t let the hemophilia interfere with his life. With his athletic body build, he played sports like any other young man. But he always felt he could never reach his full potential. “I had the complete package, except for my disease. Everything else was pretty good. If my hemophilia could have been removed from the picture, I could have gotten much more of what I wanted out of life. Even so, I made sure I kept physically fit. Taking injections all the time was simply my personal demon – a huge inconvenience.”
But Frank’s hemophilia was soon to be the least of his worries. In the early 1980’s, they started telling him at the hospital that a new disease called AIDS was transmitted in the blood, and that hemophiliacs could be at risk.
“I was terrified, of course. But at the same time, I was also very skeptical. There were so many contradictions in what they were saying. My mom kept telling me not to be concerned, that I was perfectly healthy and had nothing to worry about. So while I tried not to let it get to me, I still was constantly on guard; my antenna was always up trying to figure out what was really going on. I was also the kind of person who would challenge anything a doctor told me anyway.”
Frank’s parents are both highly educated and well-read, and he apparently inherited their questioning nature along with the hemophilia. “They are people of logic rather than religion; unless they have proof of something, they aren’t ready to believe it. And if there was something they didn’t agree with, they’d advise me accordingly. That was the type of home environment I came from, and where I got the confidence to think on my own.”
One day, after a routine check-up, something happened. They called Frank and his parents back to the hospital to tell him the results of his latest blood tests. As Frank walked in, he noticed that they had apparently emptied out everybody from the ward. “I thought, ‘Oh shit, this must be serious.’”
They put Frank and his parents into separate rooms. There was a doctor and a nurse in the room with Frank, “probably to calm me down. When the doctor told me I had tested HIV-Positive, I looked at him and asked, ‘What am I testing Positive for?’ The doctor answered, ‘For HIV Antibodies.’ I said, ‘That makes no sense. Aren’t antibodies supposed to be a good thing? Doesn’t it mean you have immunity to something?’ He replied in an angry and anxious tone, ‘No, no. You’re wrong. You’re at risk for a terrible disease that will kill you!’”
“I freaked and went screaming around the hospital ward, not so much from the fear of getting sick or dying as much as the stigma that is attached to being labeled HIV-Positive – how you’re treated from then on. You literally become like a social leper. In that moment, I was aware that my life would never be the same. From that day on, I knew I would be victimized, because ultimately, it doesn’t matter what I believe as much as what the people around me believe. In a sense, I had lost my freedom, all because of a lie.”
In the other room, his parents were being told the same story, and advised to ‘comfort your son’. Then they were brought into the room with Frank, where the doctor was spending a lot of time testing Frank’s lymph nodes, trying to find some symptom of the HIV infection.
“But I had no symptoms whatsoever, and I was never sick. And I wasn’t even sure what antibodies were being measured in this test; they could be antibodies to anything. ‘Who knows?’ I asked the doctor. He just shook his head. Looking back, I was on the right track, even as a seventeen-year-old!”
“My mom asked the doctor the same questions I did. She also thought that having the antibodies to a virus meant that you were immune from a specific disease. But these doctors and nurses acted more like priests and nuns, coming from a religious faith and fervor more than from a scientific basis. They were just more or less following orders and acting irrationally. They weren’t thinking. They weren’t looking at the person in front of them to see if I was healthy. They were simply programmed like robots, convinced th
at HIV was a deadly killer virus.”
Frank felt a mixture of fear, anger, bewilderment, frustration and disbelief. But more than anything, he felt that the doctor was wrong. “It just didn’t make any sense. This is a disease where cells are supposed to be dying, but retroviruses like HIV don’t kill cells. Besides, hemophiliacs like me, who essentially inject other peoples’ blood all the time, have a higher chance of having antibodies to lots of things that can create a false positive reaction to the HIV blood test. Everything about it was absurd. I didn’t have all the scientific data at that time, but I just knew inside that something was wrong; and yet the psychological impact was intense, because they tell you that you’re going to die.”
Frank’s diagnosis immediately began to change his life.
“It affected everything. You’re scarred. You’re not normal after that. I felt like an outcast. I started living in a world that was more like a prison than anything else. You must remember that the propaganda being popularized by the media was so strong that people really believed being HIV-Positive was a death sentence, and that HIV was contagious. It didn’t matter what evidence I presented, or how healthy I was. So I just decided I was going to have to find out how to survive.”
Are You Positive? Page 44