I’ve been told I have nine lives for the number of times I’ve almost died during my 31 year journey with HIV. Recently, the care team at Casey House treated me with compassion and without judgement to give me one more. I’m thankful, because stigma-free HIV care is uncommon.

Those judgmental words have stayed with me. I contracted HIV through a blood transfusion. Right after my diagnosis, while reconciling being HIV+ I was told, “you would have gotten AIDS anyways because of your lifestyle,” the ‘lifestyle’ of a gay man.

I felt the sting of stigma again years later.

I was gravely ill, but hopeful about a new drug treatment that was saving lives. When I inquired about the drug with my HIV specialist, I was immediately dismissed with the words, “you don’t have long to live, so there’s no point”. I eventually got treatment, maintained my independence and managed to live in relatively good health. Until three years ago.

I was experiencing severe symptoms that prevented me from eating. A year of inconclusive testing left me feeling hopeless. After hearing, “you will just have to live with it,” I needed someone to care; I needed someone to believe in me.

I reached out to Casey House; I didn’t have anywhere else to turn. Julianna, my Casey House nurse believed in me. Julianna listened and offered validation that my symptoms were real. She investigated alongside me, encouraging me to pursue potential solutions. She gave me the hope I needed to keep going.

My inability to eat compromised my health and my weight became so dangerously low it prevented me from qualifying for a procedure that could stop the symptoms. Then a respite bed opened up.

With two weeks of 24-hour care at Casey House, the team stabilized my health and helped me gain enough weight to undergo the procedure; then supported me through my recovery.

Casey House gave me back my life. Stigma-free care validated me. I was given health care without judgement, respite with full-time specialized treatment that isn’t available anywhere else.

Please choose compassion over stigma and give to Casey House this holiday season.

A special gift from you could help other men and women who are struggling to survive with HIV and need the care that only Casey House can provide.

With my deepest gratitude,

Mark S.
Casey House client

Many people living with HIV still have complicated medical needs, which Casey House doctors and nurses use their knowledge and experience to address. And, many people living with HIV still face stifling stigma and marginalization, particularly from certain cultural communities.

Christine* was HIV negative and a virgin when she married. She was married for two years and contracted HIV from her estranged husband while they were together.

Because there is a strong prejudice against HIV in her culture Christine has had an extremely difficult time coming to terms with her diagnosis. She was abandoned by the few family members and friends to whom she disclosed her HIV status. “I don’t accept myself, how can I expect them to accept me?” she says.

Panicked by her diagnosis, she has tried to commit suicide multiple times. Without a support system Christine is isolated, alone, and overwhelmed with fear that she will be labelled, judged and rejected for being HIV+.

Educated and resourceful, she accesses as much health care as possible, but is unable to allow herself to connect with the emotional and psycho-social supports she needs.

One resource she does access is Casey House’s massage therapy program. Once a month she sees Shona, Casey House’s massage therapist. Christine benefits from both the physical and emotional release. “I know you’re not supposed to talk, but Shona is a very good listener,” says Christine. There are often tears while she’s on the massage table, but she values each appointment, “I can share, I can have somebody to talk to. I can enjoy physical and emotional help at the same time”. Shona points out that there are many other services at Casey House Christine could access, but she is unwilling. The stigma, the thought of being identified as HIV+ is too much for her to bear.

Despite not being able to accept more support, Christine is being helped by Casey House; she has a strong connection with Shona, who for one day a month makes Christine feel safe, and cared for.

HIV is only part of the story.

*Christine is a pseudonym

Sam was 63 years old when he discovered he was HIV+. Prior to being diagnosed, he developed pneumonia and became very ill very quickly. Sam took himself to hospital and was only a day or two away from dying when he arrived. Sam stayed in hospital for three months before he was well enough to leave. He was released to Casey House’s inpatient program, where he stayed for another month.

Sam arrived at Casey House having lost a lot of weight and strength. He had memory loss, no balance and was using a walker to get around. At Casey House, he was able to build up his strength, thanks to great food, physiotherapy and constant attention, “the mothering without the mother”, Sam calls it. He wanted to stay longer. After living abroad for almost 25 years Sam has no family or close friends in the city and had nowhere to recover. Casey House connected Sam with Sherbourne Health Centre, where he stayed for another month before he found housing with the help of LOFT Community Services.

Unlike many of Casey House’s clients Sam is brand new to HIV; he was without resources, and had no experience with this type of health issue. Since being at Casey House his health is under control and Sam says he has a network if he feels sick. He’s working again and continues to make use of Casey House’s recreational programs.

HIV is only part of the story.

*Sam is a pseudonym

She didn’t know she was living with HIV. Her only sexual partner was her estranged husband, and she couldn’t believe her diagnosis. She spent six months living at Casey House, and offers her sincere appreciation, “Casey House gave me life and hope, important things to me. Casey House took care of me better than my parents.” Now, Mar wants to help other people live with HIV/AIDS. “I’m not giving up yet. I’m not giving up for any time,” she says.

Originally from Mynamar, Mar endeavours to overcome the language barrier, frequently pausing to confirm that she has successfully been understood, striving to make a resonant connection. This gives Mar an additional challenge when advocating for herself. “I don’t care what people think, my diagnosis is not my fault.”

HIV is only part of the story.

Although Rodney has lived with HIV for more than 35 years and has multiple health challenges, it wasn’t until he had a stroke a year and a half ago that he needed Casey House.  Rodney’s health was in decline, CCAC services were not available and he was isolated and very lonely.  Originally from Vancouver, Rodney has no family or friends in Toronto, and trying to rehabilitate from a stroke on his own has been rough,“I’d always had people around me.”

At 65, Rodney has several health challenges in addition to living with HIV; he is diabetic, is a cancer survivor, a stroke survivor and is being assessed for suspected amyotrophic lateral sclerosis (ALS).  When his health deteriorated people assumed it was HIV related.  Since having his stroke people stare, and colleagues stopped referring clients.  Rodney is surprised how prejudiced his professional colleagues were before he gave up his psychotherapy practice.

At Casey House, Rodney receives medical care and monitoring from a community nurse, and also participates in recreational activities such as healthy cooking and the cognitive memory group.  Regular massage offers added mobility for a few days at a time.  Of Casey House staff, Rodney says “They’re an exceptional group; they work as a team here.” Rodney is a proud and resilient member of that team.  He values the connection, because it’s all he has.  Sometimes Rodney comes to Casey House, sits down in the library and reads a book, “it’s a nice little oasis to come to,” he says.

Rodney, 65, is a Casey House client who has been living with HIV for over 35 years.

My name is Brad*, and this is my story. It probably starts out a lot like yours.

I was born into an average family in an average small town in southern Ontario in 1963. But I wasn’t like my parents or my siblings. I knew I liked boys as far back as I can remember, and that it made me uncomfortable to think or talk about sex.

By the time I was a teenager, I knew without a doubt that I was gay, but I was too afraid to tell anyone else. It felt clear to me that my family wouldn’t understand, and neither would my community. Besides being the punchline in jokes, it felt like nobody talked about, thought about or cared about gay people. I felt alone.

When I was a senior in high school, I had a massive crush on Ryan. I would have given anything to ask him to prom, but instead I took my best friend Nancy because I knew it wouldn’t be possible to ask a guy.

When I was 22 I moved to Toronto. I wanted to escape my small town, but more than that, I wanted to stop hiding. The big city allowed me to explore my sexuality in a way I never could before, and live freely as a gay man.

I became a part of a community and met lots of gay friends who had pasts like mine. I wasn’t alone anymore. I had fun. We all had fun.

By the time I hit my late twenties, my friends started getting diagnosed with HIV, and dying. I sat with them, cried with them, and held them as they spent their last days at Casey House. By 1992, I watched an entire community – literally all of my friends – die.

I became convinced that I was next. I really thought I was going to die. Then, in 1994, it happened. I was diagnosed as HIV positive. I was 31 years old.

I started treatment in 1995, taking AZT, an early HIV medication, but major side effects kept me in the hospital for two months and left me with permanent liver damage. I ended up spending another few months recuperating at home. My health wasn’t great, and I was forced to stop working. I went on ODSP and moved to a smaller apartment.

In 1997, when it became available, I began highly active antiretroviral therapy (HAART), which stabilized my health. And while it didn’t come with adverse side effects, it didn’t mean that things were great. The next year I ended up acquiring a bacterial pneumonia that only people with compromised immune systems are susceptible to, and ended up in the hospital for a month. After that I was discharged to the Casey House inpatient program, where I stayed for another month to recover.

Once I was discharged, I spent all my time at home, alone and isolated. I was 37 years old and unable to work, so I didn’t even have coworkers to see on a daily basis. My lack of friends and time spent alone led to a diagnosis of depression. I started seeing a psychiatrist who began treating my depression, which was good, but it meant new meds. Pills after pills after pills.

My early 40s were a challenge, and not because of a mid-life crisis. The combination of my HIV, my age, and poor nutrition meant that a small scrape turned into a deep wound within a day. It took nurse from Casey House coming to my home three times a week for three months to clean and dress my wound before it healed properly.

In 2017, Casey House started a day health program, and I registered as soon as I could. They considered me a “perfect candidate” because of my social isolation and the neuropathic pain I experience. I never imagined that these burdens in my life would be my entry into such an amazing place.

Through the day health program I am able to have a massage and physiotherapy once a month, which is wonderful because HIV has affected the nerve endings in my hands and feet. They tingle constantly, and pain medication just does not help.

My social circle is starting to grow again because I’ve got a place to come for lunch and just hang out with people who aren’t going to judge me. And I’m a member of the legends group for clients over 50. I’m eating more and even gaining a bit of weight.

As I look ahead to my sixties, I know what’s ahead. I know that my HIV medications are softening my bones, so osteoporosis is likely. I also know that my mobility will continue to decrease, and that my risk of falling is going to be greater all the time. I’ll probably end up with an assisted device, which will make me feel like an old man, which is funny. Not that many years ago I never imagined I’d ever become an old man.

Knowing that Casey House will be there to support me in whatever happens makes thinking about my future less scary. It’s comforting.

My name is Brad, and this is my story.

But it’s not just my story. It’s the story of hundreds of people just like me, whose lives have been changed because of the compassion and care offered by Casey House. It’s the story of Andrew and Steve and Rick and Kyle and so many others.

Together, we’re the face of Casey House.