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Susan Wesley, LISW
Kevin Drummond, LSW, CCDCI
AIDS Volunteers Of Cmc~nnati
2183 Central Parkway
Cincinnati, Ohio 45214
(513) 421-2437
It is estimated that "More than 30 million people worldwide are infected with HIV but less than 10% of them know it." (The AIDS Reader, Vol. 8, No. 1, 1998) Most of us first heard of this deadly disease in the early 80's. Through the mid 90's, persons living with AIDS (PLWAs) were still dying at a rather rapid rate and often times alone and in pain.
Living with HIV/AIDS could be equated with being on a roller coaster ride. The ups and downs and twists and turns are often numerous and unforeseen. Over the past two years many strides have been made in managing the disease of HIV/AlDS. The development of protease inhibitors has changed how many infected with this disease live and die. Testing has also changed. What used to be the only indicator of how well or poorly one was doing was the T-cell count, but now there is the viral load which gives a much better indication of how a patient is truly doing on the newest medications. Viral load lets a physician know that the combination of drugs a person is talking is truly keeping the virus in check or even preventing replication. T-cell counts are still taken but carry less weight in the fight against HIV/AIDS. Persons with Very 10W T-cells anti undetectable viral loads can be in good health. (Undetectable is not synonymous with cure.) As viral loads decrease, T cells have a better chance of replenishing. For some the medication works very well. for others it does not. And then there are the side effects, the number of pills and the rigid time schedule. A little known fact about HIV/AIDS is how individual the disease really is. If research isn't changing a patient's drug regimen, their own tolerance is. Just to name a few of the life altering changes that go along with living with HIV/AIDS in the 90's.
Many more psychosocial. issues cone into play in the lives of PLWAs. Socialization, loss (physical and mental capacities amd external items), ignorance of others, adaptation to a whole new life and way of thinking, facing one's own mortality, role changes, employment changes/losses, sense of self and self-esteem, purpose, housing, grief and bereavement, religion/spirituality, depression and more... The roller coaster continues up arid down, round and round. To get off the ride means to die and yet the ride must end. Is there really any choice for PLWAs?
Medications either don't work or only work for a short period of time. The virus can mutate and become untreatable by the medications now available. What is the sense of holding on to the possibility of hope when being let down is more the reality? Depression can lead to an apathy toward death as well as living and lead some to choose suicide.
For many, HIV/AIDS in the 90's is marked by confusion, depression and fatigue. Those experiencing severe fatigue may not be able to care for their family or be productive employees. Parenting may have to be given up to others and going on disability may be the only income available. For many it is a waiting game, like standing in line waiting for your turn on the ride.
Uncertainty is about the only constant when living with HIV/AIDS and dealing with the above mentioned issues. Living with a chronic/long-term illness can be wearing on the infected as well as their support system, whom we affectionately call the affected. "We in the health care and caregiving communities frequently encounter people with life-threatening illnesses at the point when they are no longer who they have been and are not yet reborn into who they will be. We meet them in the space between 'no longer and not yet.' Joan Borysenko) Let us as professionals learn all there is to know about this disease and attempt to better acquaint ourselves with the hurdles our clients must face on n daily basis.
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