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