I have always been adamant that HIV would not hold me back from my goals and aspirations. Work and career can be sources of anxiety on their own, and an AIDS diagnosis would add further anxiety. I try my best to not allow HIV to define my life and work.
Know Your Rights and Your Company's Policies
In most workplaces that do not directly provide health care, you are under no obligation to disclose your HIV status. The insurance company cannot disclose your status to your employer, but your employer could find out through benefit payment records or your application for short- or long-term medical leave.
In my case, my company's human resources department was barred by internal policy from sharing my health information with anyone. When I returned to work after a six-month medical leave following an AIDS diagnosis, I had no idea if anyone knew why I had been out on sick leave.
I was diagnosed in 2004 and became very well versed in my company's medical leave policies as well as the health plan. I was eligible for several post-hospitalization programs and rehab therapies. As soon as I returned to work, an ergonomic expert visited my work station, and I was provided a stand-up desk and a very expensive ergonomic chair and stool.
I was very fortunate to have high-end health coverage and top specialists on my medical team. Many do not have the same luxury. It's a good idea to understand your company's medical plan and prescription medication and long- and short-term disability policies. The same goes for coverage such as your state's Affordable Care Act (also known as Obamacare) program.
Now that HIV and AIDS are considered disabilities, you are protected by law and able to ask for and receive help to perform your job. They should be flexible about scheduling adjustments for medical visits, as well as changes in work tasks and even a change in supervisor. I was able to fit my medical visits around my schedule and always mentioned to my coworkers that they were for routine checks.
I was in the tech industry, with enormous pressure on performance and results. It's best to be at the top of your game and be up to the job to meet and exceed expectations.
It's not a good idea return to work after diagnosis, illness, or recovery unless you are mentally and physically able to perform your job well. Even though I didn't necessarily need a full six months of recovery time, I was advised to wait it out and complete physical therapy before returning to work. Since I had been in an induced coma for a month, my leg muscles had atrophied, and I continued physical therapy post-hospital.
I had great anxiety about returning to my role as a director in finance, managing a global team of 60 people. I was getting calls while in the hospital from coworkers saying that someone wanted my job and advising me that I should return soon.
As my job involved heavy international travel, I needed to be in top condition to face long-haul flights and jet lag. My medical team made many adjustments to my travel routine, such as compression stockings to avoid another blood clot and meds for potential stomach viruses or foodborne illness. My doctor was very concerned when I travelled to areas with outbreaks of diseases such as the bird flu.
I was lucky and didn't require frequent medical visits after I returned to work. But if you do, gauge how flexible your boss is on time off for medical visits. It's a good idea to try to plan absences so as to cause less disruption and not to place undue burden on your coworkers to perform your responsibilities.
I found it important to recognize the difference between anxiety about health versus plain old work stress. The anxiety of being in a bad job or a hostile or unfriendly work environment can contribute to a loss of physical wellbeing for anyone. I was concerned about my hostile work environment affecting my immune system at one stage and found myself job hunting.
Pros and Cons of Self-Disclosure at Work
In most cases, side effects or HIV-related conditions are not visible, so you can usually go undetectable (pun intended).
Personally, I did not see any upside to disclosing to anyone in my last jobs. I felt it was not a conducive environment to disclose, nor did I feel the need to discuss my condition. I gave it careful thought and did not want to risk getting unwanted attention. At the time of my hospitalization and recovery, I was living in a "company" town -- many of my neighbors were coworkers as well. I had a small circle of out-of-state friends and immediate family who knew the details. I still keep my situation very private in social and business circles.
Since I had been on the front lines of the HIV/AIDS battle since the early 1990s, I knew there were still stigma and fears about the virus. I was concerned that I would be considered a long-term investment. I was already feeling that my age (over 50) was a factor in not being chosen for executive training programs. I no longer had "the runway" like someone of 30 or 40. If I added an AIDS component, it could be another factor in denying me future upward career moves.
I joined a small company that considered adding health insurance as a benefit. After the insurance broker confidentially gathered the health information of the 15 employees and their families, the premiums were far higher than anticipated.
Though the details were kept private, there was a large percentage of people in this pool with a chronic condition.
Chances are, you are working side by side with a cancer survivor or a person with diabetes, asthma, or other chronic health issue. You are one of a large percentage of people in the U.S. with a chronic condition. A 2014 study found that 60% of all adults in the U.S. have at least one chronic condition.
If you do choose to disclose, in my experience, the first question you'll get is, "How did you get HIV?" -- along with shock, horror, and sympathy.
It's up to you to gauge how the person will react and how to answer questions. You can mention that it's a chronic condition and why.
Selective Disclosure May Be Helpful to Others
I became very knowledgeable about dealing with a serious chronic condition. Besides myself, I had dealt with two other immediate family members dying of AIDS-related illnesses and my mother who had survived ovarian cancer.
My unfortunate experiences and lessons learned were now of use to others who were either directly or indirectly affected by serious illness. Often I would advise on practical issues of choosing the right medical team, navigating health insurance, as well as the emotional aspects and support. When my coworker with late-stage lymphoma reached out for support, I was happy to help. I was able to guide the family through patient management and, unfortunately, dealing with end-of-life care.
Exploring New Horizons
After diagnosis, I -- like many -- had many questions and felt insecure about the future. Can I maintain quality of life? Will the meds keep working, or will my immune system betray me?
I had over a decade of no HIV-related illness and few side affects from the meds. I carried on my career without missing a step, seeking promotion and succeeding at expanded responsibilities. I also changed companies and took on a position of even larger scope. I felt confident that I could continue performing and exceed my manager's expectations. However, as I reached my later fifties, my passion began to lie elsewhere. I made a career change while I was on top of my game.
I chose to leave corporate life and seek training as a screenwriter and film producer. It required training, networking, and resilience to face the rejection and the volatile entertainment industry. After a few years, I wrote and produced several short films and web content.
I hope that you won't let any aspect of your diagnosis hinder your career, future plans, or goals.
Get in the mindset of living a long, rewarding life without having HIV define you.