Blog #2

A classmate of mine who recently commented my last blog mentioned the sympathy that many people feel toward those with cancer being greater than that felt for those with HIV, because many view the latter as a disease that is often contracted due to the infected person's own actions. Actually, this goes along the lines of something I've been wrestling with for some time now.

Like HIV, I think that many diseases are stigmatized in certain ways. From my perspective, cancer instills within people a particular amount of fear and sympathy. A lot of this comes from awareness. Cancer gets a lot of philanthropic and media attention, and there are many different types infecting many different kinds of people. While HIV needs and gets some fundraising, media coverage, and is more widely experienced than people may think, its association with unprotected sex, and the mentality that it is only relevant to the gay community and/or minorities plays a role in its negative connotation and lesser compassion that is so often found with cancer.

My own autoimmune disorder is sometimes compared to AIDS, but while AIDS is characterized as an underactive immune system (one is more susceptible to externally acquired illnesses), lupus is an overactive immune system (the immune system attacks your own body). I am pretty open about my ailment while trying to live a normal life and keep complaints to a minimum, but most people do not understand it anyway. Because I am able to look relatively healthy most of the time, like many people with HIV for example, people sometimes don't believe me or cannot sympathize with the struggles. I have been around many people with cancer, and while it is completely warranted, they do receive a lot more support both out of a knowledge of what cancer can do/what treatments are like, and the presence of sometimes more visible adversities.

One huge perception of HIV that I don't have to deal with is that many believe the infected individuals are at fault. While poor decisions like using contaminated needles for drugs or having unprotected sex with infected individuals can lead to HIV, there are many people who A.) do these things and never suffer from the disease and B.) who contract it at birth or even by certain medical procedures gone awry, etc. Regardless, people make sex-related "mistakes" all the time. Not only is it unfair for the relative few who contract HIV to be "punished", but it really is not good for anyone to be, sometimes for making one wrong move that changes the course of their life. It reminds me of when young pregnant women are looked down upon even though so many people have premarital sex. Whether they voluntarily had unprotected sex or it was an accident, to an extent it could have happened to any of them. Speaking of vulnerability, HIV effects as many different races, ages, and sexually orientations as cancer.

Arguably, while cancer is not as directly or immediately preventable, many life choices can lead to it. Smoking is one of the most prevalent causes of cancer and the main culprit of lung cancer, and people who smoke now know the risks, yet continue to do it for years-sometimes even after being diagnosed with cancer. Yet, they don't seem to suffer the same way HIV positive/AIDS patients do from what it seems. Other factors like lack of exercise, diet, and exposure to carcinogens can either compound or replace genetic causes of cancer-but people allow it to happen. Of course, they still deserve treatment, compassion, and to be functional members of society whenever possible...and so do the HIV positive.

Did You Know

I actually tried to look up attitudes about cancer versus HIV and did not find much. This gives me an interesting aspect for my own research, in which I think it would be cool to conduct some interviews and have a firsthand resource for statistics and dialogues on people's perceptions. Still, I came across some information about AIDS-related cancers that I never really thought about or heard much of even though it makes sense.

Whenever I think of AIDS and the susceptibility to illness it entails, cancer doesn't come to mind. I think of colds or other viruses capable of killing people with a suppressed immune system; however, people with AIDS are more susceptible to cancer, especially certain types like Kaposi sarcoma.

The following is a graph depicting a relationship between breast cancer and AIDS diagnosis:

Image from: http://dceg.cancer.gov/newsletter/Linkage0307.html

Apparently, the trials of cancer do not transcend that of HIV/AIDS.


For more information, check out: http://www.cancer.gov/cancertopics/types/AIDS
http://dceg.cancer.gov/newsletter/mar07/figure1.gif

Blog #1 And so it begins...

I associate blogging with an inevitable level of candor, so allow me to begin by saying that I did not do classwork the first week of classes. I spent most of the week preparing for them, because my current situation, which entails adapting to my own illness, requires me to take a little more time to re-accustom myself to college life every semester. Though I am suspected to have chronic lyme disease, lupus, or some combination of the two, the diagnosis is still pending and my treatments are a "shot-in-the-dark" so to speak. I was not sure if I would be allowed back this semester after taking medical leave for Fall 2010, and I sat at my computer desperately trying to find online courses open that could be applied to my degree. This also proved difficult when my one-and-a-half-year-old hp laptop began falling apart at an alarming rate in a weird attempt to emulate my organs or something.

With that, I admit that this course was not my first choice. First of all, I'm not even sure I want anything to do with the medical field. While anatomy, biology, and health occupations have fascinated me since I was a child and the only one in my 4th grade class to know what an anatomical heart looked like, I'm not sure I can realistically make a career out of it any longer. Will I be able to work in such a stressful, demanding environment anymore? While I used to think of myself as the first person who would be able to handle something like the emotions associated with a pediatric oncology ward, stress now causes physical pain. Can I handle the courses to finish my degree? Can I work everyday for many hours? I have also developed a bone of contention with the system as my medical bills pile up, insurance premiums grow, and some doctors fail to do everything in their power to efficiently treat me and place money above all. All of this sometimes hinders my motivation in conjunction with my physical ailments and impending cognitive dysfunction (difficulty concentrating and memory loss that sometimes comes with systemic autoimmune diseases). Regardless, I am profoundly interested in health as a subject area and intend to utilize that passion as much as possible to succeed until I can finalize a life plan that is conducive to having a chronic illness.

Sorry if that seemed irrelevant, but that is what has been running through my mind "the first week of classes" among other things. I have also taken extensive steps to become more organized. I got a gigantic planner in which I have labeled and color-coded every assignment in every course calendar and came up with a system to categorize to-do lists and keep them minimal enough to actually accomplish. I also keep post-its of the days obligations on the cover of it so they are visible. I have always been known for my memory and resisted the idea of needing to do this for a while, but when you are ill there are certain realities you eventually have to face, even if they require more effort of you.

I also finally got to campus to get my textbooks for this course. I became instantly overwhelmed by all of the titles. It depressed me, even. I thought, "With everything going on, this is exactly what I need to be reading" in a sarcastic tone. I purchased my HIV course CD and winced as the bookseller shouted the title across the room to have somebody retrieve it as people stared at me. I began to consider the negativity associated with HIV-even my own feelings and fears when being at the Infectious Disease doctor's office alongside them. Sometimes when I tell people I have an autoimmune disease, their minds jump to AIDS and the expressions on their faces are ones of shock and disdain. Sometimes it is mingled with pity or profound sadness. How could "someone like me" have this thing they'd heard of? How did I allow myself to acquire it? Couldn't they be at risk in my presence?

At that moment, I decided that this course held relevance to me. It would not depress me nor would I associate it with bad memories. Instead, I would use what I learned to relate to it on what small level I could, to gain perspective and insight, to apply it in my frequent encounters with known HIV patients, and to correct misunderstandings. For my research, I want to focus on the attitude toward HIV and its stigma and combating it.

Did You Know

HIV is only transmitted through four fluids: blood, semen, vaginal fluids, and breast milk. They also have to enter somebody's bloodstream in order to infect them.

While this seems elementary, there are a lot of people who believe otherwise. The following video examines a few of the most common myths regarding HIV transmission. The woman who created the video uses a bit of crude language, but I liked that she kept it simple. She is trying to be relatable, but consider this a warning. If you feel anything is not thoroughly explained or may be incorrect, please let me know.

Showing that HIV is relatively difficult to transmit is not meant to undermine its capability or understate our vulnerability, but rather to expel myths associated with HIV positive individuals living their daily lives and potentially harming yours. It also shows how much control you actually have in preventing it, allowing you to be more aware of the steps you can take.

Introduction

My name is Jacquelynne Bernstein and I am in my fourth year at University of Central Florida. I am currently enrolled in a course called "HIV Disease: A Human Concern" for the Pre-clinical Health Sciences major. This blog will be used to convey the things I learn during my progression toward HIV awareness. While many know of the as-of-yet incurable virus and have developed certain attitudes in its regard, relatively few who are not experiencing it firsthand understand the effect of the stigma, have delved into the myths versus realities, or taken the time to realize the volume of its effects or the vulnerability of everyone, even outside the stereotypes.

As a chronic lyme disease/systemic lupus patient, I have had a taste, albeit just a sample, of what it's like to have an incurable autoimmune disease like AIDs. Due to the nature of my symptoms, I have been previously suspected to have the disease, and though I tested negative, the mere prospect was so frightening, I can only imagine what it is like to test positive. I have sat in waiting rooms with individuals openly discussing their battle with HIV and have thus realized my own prejudices and lack of comprehension about the experience up to that point. Half of the battle, I now believe, is dealing with the negative stigma of the disease and trying to remain a productive, accepted member of society without putting others or themselves at risk. HIV positive individuals' achievement of this, however, is also contingent upon the knowledge of the people they are trying to share a world with in equality.