Perhaps you remember Nathaniel Hawthorn’s classic book, The Scarlet Letter, from your high school or college American Literature class. Life with HIV/AIDS often resembles the tormented life of Hester Prynne, the main character in the story, who was forced to wear a scarlet letter “A” to remind everyone in her village that she was an adulteress. Like Hester and her adultery, people diagnosed with HIV/AIDS often face a life of shame, sickness, and pain because HIV/AIDS remains a highly stigmatized disease. The mistaken belief that the public can identify victims and blame their plight on promiscuous behavior is of particular torment to members of the gay community.
A vibrant woman with grown children tearfully approached my office numb with fear. Angela’s diagnosis was only hours old. She had heard nothing after hearing the health care worker say, “Positive.” Angela had HIV/AIDS. Angela isn’t alone. A heartbroken girl with small children. A young gay man with small girls. A young woman with a baby. A middle-aged gay man. A man with teenagers. These and more have crossed my threshold with a face showing humiliation, fear, sadness, distrust and sometimes even death. Even the strongest spirit can be brought to their knees by the drugs used to combat the disease. Raging diarrhea, headaches, stomachaches, nightmares, memory loss and flu-like symptoms are common, even with newer improver drugs. Medications can strip the enamel off teeth, causing severe pain (the only cure is to pull the teeth). There’s more. Constant handwashing. Care when swimming in lakes and rivers. Properly cooked food. Beverages chosen carefully. Extra care around sickness and cutting utensils. Limited employment options. Often people experience loss of job and status, leading to lower self-esteem, late bills, depression and declining health. Simply living becomes a constant struggle. Sadly, the emotional pain, fear, anger and grief too often consume the person. Personal rejection and broken relationships often lead to violence, depression, blame, guilt, resentment and remorse. In some states, it’s a felony if an HIV/AIDS patient fails to reveal their condition before sex (or even before getting into a physical fight). Family and close friends are often the hardest to tell about the diagnosis, because they may abandon the person or divulge the secret to others, resulting in more lost relationships and further isolation, even causing embarrassing public situations.
Some people will be hateful and ugly, whether out of ignorance or spite. For the HIV/AIDS patient, there are tears, anxiety, sleepless nights and hours in my office seeking counseling and help. For my part, I have chosen not to judge, but to love. I offer hope, promising them that this is not a death sentence and assuring them they are not marked with a new scarlet “A” for the public to see. Still, some go into social isolation, reduce their quality of life or participate in self-punishing behaviors. My door is always open. My arms always outstretched for a hug. I will listen. I will cry. I will love. I will help however I can. You will leave better than you came. I remind them (and myself) that it is only by the Grace of God that I am not sitting in their chair.
If you need help or assistance, contact the Spokane Regional Health District at 509-324-1542 to be put in touch with a case manager who can guide you through the process of becoming involved in community and health services.
Patty Severud is a caseworker at the Spokane Center For Independent Living.