Blog #10 Staying Positive When HIV Positive

My personal goal throughout this course and blogging experience has been to understand the stigma involved with HIV/AIDS through research and relating it to myself personally. I wished to explore attitudes, but so far I have forgotten one of the most important aspects, even while sort of mentioning it the entire time.

I'm referring to an HIV positive person's own attitude toward HIV. I have never battled with my own self-esteem or fought to retain and rebuild my own confidence as much in my whole life as since I have gotten more ill. I can only imagine what one goes through after being diagnosed with a virus with such typically negative views and known to have a grim outlook.

Everyday, I wonder if it my own fault that I'm sick somehow. Is "The Secret" the truth? Have I only gotten back whatever negative vibes and thoughts I have projected into the universe? Is it mental? Is it a manifestation of stresses and anger that have been repressed for years, now making me physically ill when I thought I was going about everything the "strong way"? How can one argue this viewpoint for someone whose contracted something as tangible as HIV? This perhaps goes back to people believing that HIV positive people are responsible for their own demise, which I do not believe. As previously mentioned, we all make mistakes-some just are coincidentally, and perhaps unfairly, more costly than others.

Still, I find it in me to be angry with myself sometimes. I am willing to bet that sometimes HIV positive people are angry with themselves, or with a person who passed it onto them, whether a parent or a partner. Unfortunately, it is likely that people with HIV may perpetuate the negative stigma, perhaps because it was one that they had in their own mines prior to contracting the virus. Now they seem themselves as something gross or among the "little" people who have "allowed" themselves to get to this point. Sometimes people wonder what they did to deserve whatever is going on.

There are more constructive ways to go about this, as I am learning for myself. Being subjected to an illness yourself is just a more in-your-face testament to the fact that almost anything can happen to anyone. If I were HIV positive, I would want to use my experience for good. Even though I am tired and feel sick, I try to be honest about my own illness (well, as much as I know about it) in order to purvey a greater understanding of chronic illness and that just because someone looks alright, it does not mean they are. You never really know what is going on in somebody's life. You can only be as kind as possible and not let any negative energy others emit effect you the same way so that you can stop the cycle.

Being sick also makes yourself feel...well, not as attractive. Maybe not in all cases. I feel like because I am tired, in pain, or weak, that I am a burden. Who would want to be with somebody like that? Besides, I often think I look as bad as I feel, no matter what I do. People with HIV must struggle with their sexuality. Think about how being HIV positive narrows down dating prospects or effects ones sex life.

It is also easy to think you are weak for giving in at all, so you might try to lead a normal life. When it does not work, it is easy to be mad at yourself for not going to every doctor, eating right, or taking all of your medicine.

Because other people's perception of you may be altered, the one of yourself is something that you must fight to keep positive as well.

Did You Know

Even people with illnesses feel grateful. Sometimes they are thankful to have some means of helping themselves, they are appreciative of the "wake up call" to live their life, or they feel they have the tools to help others.

Blog #9 Making a Living With HIV

I don't want to talk about the exact scenario that was described in the Question of the Week, but rather to discuss something that it made me think about as well as something I have been turning over and over in my own mind since my ailment became a more prominent issue.

Everyone faces the tough decision of what to do with their lives. Even people who end up inheriting the family business or are placed in a position by someone they know, they still make the choice to forego any other opportunities. This means, they have a choice. It is a blessing and a curse. You have the freedom to choose, but it can be overwhelming.

Still, the grass is of course no greener for those who don't have the freedom to choose. Sure, people with HIV cannot be discriminated by law; however, there are still instances of it, and there are even some jobs which those with HIV lawfully CAN'T do.

Fortunately, my disease is not contagious in any way, shape, or form. Still, as I struggle just to turn in assignments on time or have the strength to go to a real class, I run into a lot of obstacles. I like to spend time with my sorority and my friends, merely because my brain fog does not hinder my ability to talk as much as my school work, even though conversation takes some extra thought. It keeps my mind off things whereas sitting and doing work makes me constantly think about the pain and how hard it is to concentrate. No matter what I do, though...whether its recreational or obligatory, I need double the rest most people do for an hour of doing nearly anything that requires energy. I make sure that I get eight hours of sleep AT LEAST a night, no matter what time I get tired...generally it takes hours just to fall asleep, and when I wake up I am not refreshed. I toss and turn, have ridiculously vivid dreams where I get stuck in a limbo between being awake and asleep or sleep paralysis, and I recently started experiencing sleep apnea. Waking up early in the day is difficult, and my gas tank is officially on empty by early afternoon no matter how much I hydrate, eat right, and slept the night before. Going anywhere at all requires frequent sitting, paying attention to my blood pressure, dealing with being dizzy and my feet and hands going numb, etc...so the question that's been killing me for a few years now? How can I possibly work for a living?

There are things I can do to work on my health-afterall, I don't have a perfect diet, am not on every medication I could be, and I don't even know what I have exactly in order to treat it. It is my sincerest hope that I find out what it is, get the medication and therapies I need to live a quality life. I am still adapting and adjusting, and I am positive things will get easier. Still, I must be realistic to a degree. Even if I felt like I could do everything, would people want to give me a job knowing that I have an illness? Can I work in a medical environment where, if I end up on immunosuppressants, I would be more susceptible to catching illnesses to which I am exposed? Could my haziness, dizziness, numbness, or even pure exhaustion hinder me from performing the tasks I need to or endanger someone else? Even if I do everything possible to stay healthy, that in itself is a full time job. Do I have the time to do that and still work 9-5 everyday or even be on call? How long before I would get to have a say in my schedule?

All of this made me wonder what it is like for somebody with HIV. It is illegal to discriminate, but there are some careers that someone with HIV could be more likely to expose someone else to the virus. According to AIDSlegal.com, you can only be prevented from working in a field where you can pose a direct threat to someone while simply carrying out everyday activities. A great example they use is being a surgeon. Still, a teacher could cut themselves accidentally, but that is not something that is likely to happen everyday.

Having full-blow AIDS of course, is different, because complications of it are likely to inhibit someone's ability to work, especially because of the risk of exposing themselves to other illnesses more than the risk of transmitting it.

Unfortunately, there are still cases of unnecessary discrimination that occur today. In fact, here is a link to a bunch of cases where this has occured. One example is of a cosmetology school that denied and an HIV-positive woman enrollment. There is the possibility that an employer can deny someone with HIV a job with a false excuse, perhaps regarding lack of experience when they may have not been a factor for someone else. AIDSlegal.com also says that you are not required to say whether you have HIVor not for any jobs except those that don't allow people with HIV at all.

So, should you divulge your HIV status in the workplace? An interesting European website called pozitude.co.uk discusses the pros and cons.

Pros

• There is a certain freedom that comes with being "out".
• By divulging the information, one can become an advocate of awareness, educating coworkers on how difficult it is to be exposed as well as combat stigmas.
  
• Someone who tells their employer that they have AIDS may be able to work with them on reasonable accommodations.
• Someone who tells their boss that they have AIDS may be able to explain "gaps" in work history.

Cons

• Discrimination at work still happens, even with laws against it.
• You may not have the advantages of the pros.

While the cons list looks shorter, the right to privacy and the choice to set oneself up for potential discrimination is vital to our society. It is so important that many strides have been taken to protect people's privacy, such as the HIPA laws.

Did You Know
Even health workers, who used to be required to tell people about their HIV, no longer have to disclose the information, even to people who they are giving injections and the like to. In 2000, Professor Larry Gostin called for revisions to laws which forced them to tell, arguing that people would be unnecessarily stigmatized-influencing them in avoiding testing or leaving the medical field. The following link is to the Center for HIV Law and Policy's Guidelines for HIV-Positive Health Workers:

Guidelines

Blog #8 Copping Out Vs. Helping Cope

First, to dispel potential confusion: I have not blogged lately due to a death in the family, the details of which I may go into later to relate to this course. In other words, I owe the readers a few blogs, which are to come.

This week, though, I cannot help but to talk about a major current event, which got me thinking about a particular attitude regarding HIV: "If I don't have it, it is not my problem."

We all know what is going on in Japan (Don't worry, I will get to the relevance later). Okay, if you have been "living under a rock", too consumed by Spring Break mode to read yet, or simply following a usual routine devoid of attention to the news, I suggest reading articles at Huffingtonpost.com. Most, in my opinion, are without any partisan bias, informative, and easy to read.

Do you know what is going on? Good. Or bad. Ugh, being informed is so bittersweet isn't it? Now you have a choice. You can A. Feel sympathy while also feeling helpless-but at least you know what's going on, B. Feel sympathy and try to do something about it, or C. Not care. I'm not sure whether the latter comes naturally, is some practiced defense mechanism in place so that you don't feel any pressure or pain, or if it is blatantly chosen based on knowledge and your moral perception/form of logic.

I am generally an A or B person. I have heard the arguments for not coming to Japanese aid, such as America needing too much help itself to bother, the situation not being as bad as Haiti since Japan is not a developing nation, etc. There are several reasons that, while understanding how these notions may have emanated, I can't help but disagree. I can't see how this can be seen in an insignificant way. It has been said that the disaster rivals World War II in devastation and it is apparently the 4th worst earthquake in history.

I don't see why it is so difficult to help multiple causes. If we had the mentality of only helping those who need it most, we would run into several large issues. Who is to say what is the worst, when everything is relative? Do you have some tangible way of say, numerically categorizing disasters or human need and pain? Even if you could do that, imagine all of the groups that would go unrepresented and unassisted. The context I put it into dealt with my sorority's philanthropic efforts. Coincidentally, we help an organization that raises money for awareness and a cure for pediatric AIDS. While AIDS can be pretty terrible, chances are there are many people who don't believe it is the worst thing that could happen to someone, or that this particular group needs assistance the most. That's fine, but imagine is these people had a right or the power to take away this group and put it toward what they believed needed it the most. Imagine if all volunteer efforts went to one disaster or one disease or one nation. It does not seem very logical. Even worse, what if nobody helped anything that had nothing to do with them, in which case, when it finally did pertain to them...they probably would not have the ability to do much about it.

I am sure there are some cases where organizations temporarily shift their efforts to help with a very current problem, but generally I do not think funds are sacrificed from one need to go to another. Then, there is the argument that Japan can take care of themselves. A lot of people would think that about America as well, but I bet that we would be pretty upset if other wealthy nations did not help us during Hurricane Katrina. Not only that, but from the other side, if we did nothing to help them we would be criticized and the information could be used against us in the future, influencing other nations in helping us. This works on an individual basis as well. I know that the ten small dollars I donated to Japan this week would probably have gone to a movie ticket I did not need.

Japan is obviously no third-world country, but the impact the disaster has had cannot be ignored and probably is unimaginable from this far away, no matter how much we read or watch the news. I have read firsthand accounts of those impacted by the Tsunami in Indonesia in which survivors detail their losses and express their sympathy for Japan, wishing they could do something even though they themselves lost everything. Perhaps 10,000 people, the estimated death toll in Japan, seems like a number. Maybe it is even a smaller toll than another event's. There are deaths everyday we don't know about. Regardless, those people had families who are now suffering. Those people had jobs with companies that are now suffering. Those companies are suffering, so survivors are suffering. With globalization, it is inevitable that other nations are now suffering. In some way, it could have a negative impact on you. It is confirmed that UCF students were even in Japan at the time of the earthquake.

No matter how they started out, many of the resources Japan would need to "take care of themselves" could in fact be the ones that they lost. Despite what existed before, there are hundreds of people without homes or jobs, water or electricity, etc. that need to be accounted for as their resources are displaced. The infrastructure of the city and the way it runs has been torn apart. Because pain is relative, I view suffering or discomfort as a deviation from a norm. Compared to what they were, Japan is without a doubt hurting. From my perspective, I am in pain everyday, but it could definitely be worse. That does not mean I am not frustrated by how it hinders me, or that because I don't need as much help as a paraplegic, I don't need help at all.

Imagine even all of the sick survivors in Japan. Hospitals resources are being taken up, people who need electricity and water to survive don't have it, and even AIDS patients may not be getting the care they need.

With HIV, it seems that some people don't care, or don't wish to help, because they are uninformed or because it is not personally relevant. Even though I touched a lot on Japan, I think this view unfortunately encompasses so many things and is the mentality of many in regards to HIV/AIDS. It could happen to anyone. It happens to people who in no way "deserve" it. It happens to people who are affluent even, but they never thought they would have to pay the bills for HIV or need support. I intend to help whatever way I can, because it is now a passion. If I can't help financially or physically, I want to help perpetuate the truth. Still, while AIDS seems in dire need of defense, I truly believe that if I had the means, time, and knowledge...I would want to do this for anything. Sometimes we are limited it what we can do, but thankfully organizations are specialized for that reason. Help is distributed. You can't do something about everything-chances are you can't even totally fix one thing- but does that mean not to do it all? It helps when you have a connection to an issue, but as long as some sympathy is involved, you can always at least try SOMETHING. There is a lot beauty in this world, and a lot of ugliness that allows us to see it. Odds are the planet will never be completely cleansed of what makes it hurt, but that does not mean we should sit back and do nothing about anything that does not immediately effect us firsthand.

Did You Know

King Mswati III, the king of Swaziland (a nation profoundly effected by HIV), supposedly believes that HIV-infected people should be wiped out. Interesting how even an official leader, though apparently corrupt in other ways, can be so insensitive about a disease that is so prominent within the very land he rules. How directly must something impact an individual before they become inclined to do their part to help?

To read more, visit this article.