This narrative is about our journey through the ever-changing world of being infected with an infectious disease, one that society says we deserve our faith, one that society wants us so to tell our story that they (the government, insurance carriers) want to know-and then they can deny us healthcare coverage, employment and our dignity. This journey began 10 years ago and continues still-always changing, a never ending challenge.
My wife is a Registered Nurse. She has been employed as a nurse for over 25 years. During the course of her employment, she has had numerous exposures to blood and other body-fluids, from needle sticks, blood splashes, being cut by patients and surgeons. She witnessed many of her co-workers being exposed and later becoming infected with HIV/AIDS, Hepatitis C and B, and other infectious diseases while working at various hospitals and nursing homes. Several years later, she too was found to be infected. She filed her claim with Workers’ Compensation and was told that she would have to prove exactly which patient had infected her and what date and time this occurred. (Patient Confidentially Laws) Because many of her former patients were either dead or had relocated, this task proved to be unattainable. She dropped her claim-she was also informed that she was “just one of the few who had fallen through the cracks.”
Many of our friends began distancing themselves from us when they were informed of her condition. People, who she used to touch on the arm or shoulder, would suddenly back away from her and try to find the nearest door to escape. She lost jobs because other employees were afraid that somehow by breathing the same air – they could become infected. Employers did not want her working for them since that because of her health status-this would add to their health insurance rates. I, too, began losing employment opportunities. These events did not occur all at once, just a slow agonizing descent. Fear would grip us when either one of us would have to fill out a job application or an insurance form..
We began the slow spiral down the economic and social ladder. In time, we declared bankruptcy. All during this descent, we were told that somehow we deserved this malady because this was God’s way of telling us that we were sinners; and needed to renounce our sinful ways. We were told that because of her bad choices in life, she deserved this illness and was responsible for its outcome and the cost for medical care. I was even told to divorce her-in order to save my life and my soul.
This dilemma of being told that you are positive, that you deserve this illness, the lack of support (both from governmental and personal sources); and that governments want those who are positive to speak out saying I’m infected—but when they do, they are denied employment, healthcare, and legal assistance. Each of the above issues is in conflict with the other.
The bottom line is that everyone is going to feel the impact of all types of infectious diseases. The general public may hide from the facts and choose to deny the problem; but in the end, they will experience the effects of these small unseen killers. Either from being infected or from one of their close family members, in the end- their standard of living has changed because now there are so many people infected, an example of this is this narrative, if my wife had had medical coverage at the time of diagnoses-would bankruptcy been avoided? (Someone paid for those bills-maybe you-the businesses just added the cost into what you bought, today) For a certainty, someone is going to pay for the losses that we had due to losing everything. The medical bills were astounding, the lack of support from governmental agencies and family were disappointing, the levels of discrimination on all levels were staggering; all left their impression upon us.
There are millions of people around the world who are now infected. The reader may sit back, ignore the facts, deny the proof and enjoy the time that remains. Darwin stated it best—Survival of the fittest, not the strongest or the biggest, but those of the species that sees a threat, learns to adapt, and educates his young against the latest threat—will survive.
We, my wife and myself became involved with this organization because we felt that something had to be done. Denial, ignorance is a wonderful trait only if you can afford the luxury.
Each of the different folders within this site is just a part of the total picture of infectious diseases-each area interacts and is connected to the other. Governments want the data on the number of people infected in order to project the impact for their country; however they will deny those numbers – because they want companies/nations to invest their money. Who would invest money in a company or a country when most of their people are positive and will require money invested or denied for healthcare or a loss of productivity. Insurance companies want this information—that way they can deny healthcare coverage for those with medical problems and save those healthy people money on their insurance rates.
This has been an interesting journey for my wife and I, this disease has stripped the façade of many ideals that we have held dear. Just as when your time comes, it will awaken you to this fallacy. Just as when a woman we knew, her grandson was infected with AIDS-she refused to be in the same room with him; because “what would happen if I became infected-the rest of the family would hate him.” Or finding out that many young people who are now infected and knowing this-refuse to use any sort of protection when having sexual relations because “someone gave it to me.” Or the rage that you experience when you are told that you deserve this illness and that this is God’s way of removing you from the just and saved. Or seeing a doctor and then being told that he will not treat you because you are infected.
BUT, there are some very compassionate people in this world. They must be held very close and welcomed. This is very hard to do and to know who they are-but these angels are very true.
Today, many of your friends are now infected-people you have worked with, shared a beer, and enjoyed a joke-do you know who they are? Many times, only the closest of the closest of friends will be told that they are infected-so if you know someone, really know them-then understand that they must think you are pretty special, because so many are not told. Trust me, we tell no one today-NO ONE and for good reason. We do not want to loose anymore than we already have. The friends who know, we have know for years and really do not have the time to invest in finding new ones.
Have a good life