Download a PDF of this Course for Offline Reading!
Download “HIV / AIDS : Providing Effective, Informed, and Compassionate Care – 7 Hours” PDF
I remember when I first started seeing clients as masters student in a marriage and family program. I had already spent a year in graduate level coursework around mental health and the basics of family therapy when I started my practicum (internship) at San Diego City College. This internship was at the on-campus mental health counseling center and we served the student population along with their family members. I was initially drawn to working with college students as I had already spent some time teaching at the graduate level at Texas State University where I completed my Masters degree in Communication Studies. During that time, I discovered my passion for working with college students and so the idea of a placement on an actual college campus was truly exciting. However, all of the graduate coursework, books, articles, and even roleplays could not have prepared me for working with students in a mental health setting. It’s one of those things that you do not truly understand until you start doing it. I will never forget working with one of my very first clients, Rick. Rick was a 22 year old, Latino, male college student who grew up in San Diego. Although he was born in the United States, most of his family were not US citizens. He was the first to go to college in his family. Rick was gay but no one in his family knew. While his family constantly questioned why he never had a girlfriend, Rick always gave them the same excuse: he was a perfectionist and hadn’t found “the one”. Rick told me about the guilt that he felt knowing that he was lying to his family about who he was but Rick had a bigger secret he had not disclosed to many people: he was HIV positive.
Being such a new therapist at the time, I had a lot of anxiety about working with Rick because I felt like I didn’t know what I was doing. And looking back to that moment, in many ways, I was right. But through excellent supervision on-site and in my academic program, I was able to help Rick grow in huge ways and honestly, I think I grew even more through that experience. Maybe you are someone who has never worked with a person living with HIV/AIDS or maybe this is your expertise. Either way, this course is designed to be insightful, relevant, and engaging for all mental health professionals. While the course is heavy on facts about HIV/AIDS, I also include stories and examples throughout the course to help guide the clinical practice around this topic. Mental health professionals are not always the best equipped to work with this population. Let’s change that!
Understanding HIV and AIDS: Where We Have Been, and Where We Are Today
The 1980’s was just beginning when HIV and AIDS first reared its ugly head in the United States. At the time, primarily homosexual men were developing immune-related problems and no one could explain exactly what was happening. The crisis was immediate and life-changing for many people impacted.
At the beginning there was no official name for the disease, and many thought it was isolated to the gay community. However, by 1982 the CDC had started referring to the terrible disease as AIDS, and it had been identified as a disease that expands well beyond the gay community.
This previously unknown disease took precedence in the minds and hearts of many people across the world, and brought with it panic, fear, and uncertainty. For those who had the disease, it was marked with much suffering, and in the end, death. To truly understand the impact of HIV/AIDS, it is not enough to just read statistics and history. We need to understand directly from those who were impacted exactly what it was like to live through this crisis. The following are real experiences shared by real LGBTI people reveal what happened to them during this time.
To give you an idea of what gay men who lived through the HIV Epidemic of 80’s went through, here are some stories were shared on Redditt (2015):
● I’m a 62 year old gay man. I thankfully made it through the epidemic that started in the early 80’s and went right through the mid-90’s. You ask what it was like? I don’t know if I can even begin to tell you how many ways AIDS has affected my life, even though I never caught the virus. By the early 80’s, I had what I would consider a really large circle of friends and acquaintances and once the epidemic really started to hit, it was not uncommon to find out 3, 4 or more people you knew had died each month. We set up informal and formal support groups to look after our friends who took sick. Feeding them when they would eat. Changing them. Washing them. Acting as go-between with families who “were concerned” about their sons, nephews, brothers, etc., but wouldn’t lend a hand to help because AIDS was, you know, icky. After they passed, there were memorial services to plan with no real time to grieve because when one passed, you were needed somewhere else to begin the process all over again.
● ‘By the early 80s, I had what I would consider a really large circle of friends and acquaintances and once the epidemic really started to hit, it was not uncommon to find out three, four or more people you knew had died each month. We set up informal and formal support groups to look after our friends who took sick. Feeding them when they would eat. Changing them. Washing them. Acting as go-between with families who “were concerned” about their sons, nephews, brothers, etc., but wouldn’t lend a hand to help because AIDS was, you know, icky.
● ‘After they passed, there were memorial services to plan with no real time to grieve because when one passed, you were needed somewhere else to begin the process all over again.
● ‘I kept a memory book/photo album of everyone I knew that died of AIDS. It’s quite large to say the least. Who were these guys? These were the people I had planned to grow old with. They were the family I had created and wanted to spend the rest of my life with as long as humanly possible but by the time I was in my late 40s, every one of them was gone except for two dear friends of mine.
● ‘All we have left of those days are each other, our memories and pictures. I hope that statement doesn’t come off as pitiful though. I am fit, active, healthy and you know what? I enjoy every single day of my life. I enjoy it because most of my friends can’t. In my own personal way, I want to honor their lives by living and enjoying mine.’
● I lost ALL of my friends from back then. I was attending a funeral about every 12-16 days. There were no tests available and no treatments. You didn’t know you had it until you started getting sick, and at that point, you’d only have a few weeks to a few months left before you died.
● Then they weren’t sure how it was transmitted…casual contact? saliva? tears? sweat?…no one knew. People started keeping lists of who became sick, and who they’d slept with. it was definitely confusing, scary,…very hard to see so many people die in such a short time period.
On top of the emotional pain, there was (and often still is) a strong stigma created by the disease, and confusion about how it is spread, as the experiences below explain:
● ‘It was flat out scary. every guy you met was like a possible time bomb. especially the early period when we knew very little about it – didn’t know if you could get it by kissing, by holding hands.’
● ‘Then lots of your friends or friends of friends get sick and sicker and then die. And you never ever quit being really really pissed off about the whole thing. I’m alive today due to sheer randomness.’
● And another said: ‘If you were living in the Castro in San Francisco, everyone in the neighborhood was gay… So it wasn’t just your friends that were dying, it was your whole neighborhood. One day your mailman would be replaced, the next day that flower shop was gone… You wouldn’t be invited to the funeral, so it was just like people were disappearing.’
● ‘It was inexplicable and unexplained, for a very long time. Research was underfunded, and in many cases large institutions and public figures rooted for it to be happening. People died suddenly of unexplainable things. Toe fungus! Tongue thrush! Rashes. Eyes welling up with blood. Horrible.’
● ‘Everyone knew it was hitting gay men, nobody knew what it was. They called it the gay cancer. People were very superstitious. I had handfuls of groceries and man lectured me on not pressing the elevator buttons with my nose because I could catch AIDS from it. Yes. That happened.’
● ‘Sitting at the bedside of a terminally ill friend, and just holding their hand when everyone else was just terrified, was a gift I was one of those willing to give.
● ‘No one should die alone, and no one should be in the hospital on their death beds with family calling to say “this was gods punishment”. My friends and I, men and women, acted as a protective layer for ill friends, and companion to mutual friends juggling the same, difficult reality of trying to be there, and be strong when we were losing our family right and left. Difficult times, that should never be forgotten.’
Although the impact was initially felt among men, women also played a critical role in caregiving, support, and feeling the direct hit in losing those that they loved.
● A lesbian of the era said: ‘While I was not ‘at risk’ (per se, we know more these days), we all lost many good friends. It is true that there is a somewhat mystifying (to me) separatist attitude between some gay men and lesbians, especially back then, this tragic time really brought us together.
● ‘When the AIDS crisis struck, it would be many of these same women who would go straight from their jobs during the day to acting as caregivers at night. Because most of them lacked medical degrees, they were generally relegated to the most unpleasant tasks: wiping up puke and shit, cleaning up houses and apartments neglected for weeks and months. But not being directly responsible for medical care also made them the most convenient targets for the devastating anger and rage these men felt – many who’d been abandoned by their own family and friends.
● ‘These women walked directly into the fire. They came to the aid of gay men even when it was unclear how easily the virus could be transmitted. Transmission via needlestick was still a concern, so they often wore two or three layers of latex gloves to protect themselves, but more than once I saw them, in their haste and frustration, dispense with the gloves so that they could check for fevers, or hold a hand that hung listlessly from the edge of a bed whose sheets they had just laundered.
● ‘I knew a woman around that time who’d had at one point been making bank in construction. But at the outset of the AIDS crisis she had abandoned her career to pursue nursing instead, and was close to her degree when we were hanging out. She was a big, hearty drinker, and fortunately so was I. We’d been utterly thrashed at a bar once when someone whispered a fairly benign but nonetheless unwelcoming comment about her. Middle fingers were exchanged, and afterwards, furious and indignant, I asked her, Why do you do it? Why did you abandon a career to take care of these assholes who still won’t pay you any respect? ‘She cut me a surprisingly severe look, held it and said, “Honey, because no one else is going to do it.” I remember feeling ashamed after that, because my fury and indignation weren’t going to clean blood and puke off the floor; it wasn’t going to do the shit that needed to get done.
● I am at 50 year old straight woman, and I lived in Noe Valley (just over the hill from the Castro), late 80’s to mid 90’s. The impact was felt by everyone. I used to walk over the hill to the Castro and help stitch borders on the panels for the AIDS quilt. Walking into that office was indescribable. Endless shelves of folded panels, each a life cut short, each a set of family and friends that now had a permanent hole in their heart. The pictures of the quilt on the national mall are moving, but seeing them all folded on shelves, with new ones arriving to be cataloged and prepared every day….. Then there were the friends I lost. But the time sitting, talking while one good friend infused himself-those conversations are still significant to me today. My greatest regret in life is not being able to help an old friend locate his family. I happened to meet an old HS friend and because of the circumstances, I knew he had AIDS. He expressed sadness about his family – they had moved from his childhood home and did not tell him-they had stopped speaking to him when he came out. I tried to locate his family through an acquaintance, but time ran out before I succeeded. I still wish I had spent more time on this. And, there was an impact on the straight community. My female friends and I were in the habit of getting regular HIV tests. We knew it was a disease that could strike anyone. So, we all became much more careful about our sex lives. My kids (young adult males) probably think I am crazy, but I have kept our house stocked with condoms since they were in HS, and I told them many times to use them.
These stories are hard-hitting and bring to life the devastation caused by HIV/AIDS. Today we have a much better understanding of the disease and how to treat it. Still, it continues to impact the lives of many people today. Next we review some facts about HIV/AIDs that are important to understand as a foundational point, and where the medical field is at in terms of treatment options today.
