Back in 1986, my friends found me unconscious in my bedroom. They brought me to the ER, and a few days later I was told that I had AIDS. Because I didn't have insurance or speak fluent English, they told me to go to Cook County Hospital for follow-up care. But it was a hassle -- I had to take a train and a bus, and then wait in long lines. Sometimes I spent the whole day just getting blood tests and meds. And there weren't really any Spanishspeaking doctors there. They were mostly Filipino or from India and spoke very little Spanish. I appreciated their attempt to communicate, but they didn't understand cultural things. They would tell me not to eat too much salt with my tacos -- but I was Mexican, not Puerto Rican, so I rarely ate tacos. When I felt better, I stopped taking my meds and I stopped going to the doctor.
A couple of years later, I ended up back in the same ER. By that time, I had learned more English, for my work. I don't think that my spoken English was the best, but I understood almost 100% of what people said to me. Luckily, a friend told me about a clinic for gay men near me. I couldn't believe I had been sent so many miles away when there was a clinic within walking distance! I've had many friends who were also sent all the way across town to Cook County just because their English wasn't perfect. Travelling for so long is just as much a barrier to care as language is.
The doctor at the gay clinic was very meticulous and asked many questions about my medications and exactly how I took them. So I told him that I crushed them up, poured them into a hot bath, and soaked in them every day for a couple of weeks before I started taking them orally, so they would work better.
He got very angry and even began to yell at me. He sent me to a psychiatrist and a learning specialist. The psychiatrist didn't find anything wrong. But every time I went back to see this doctor, he always seemed angry with me and didn't spent much time explaining anything -- just ordering blood tests and giving me my prescriptions for the next three months. And he would ask the same question every time, very slowly: "Aarre ... yoouu ... taking yourrrr ... me-di-caaaaa-tions?" I'd always say yes, because I was.
Maybe he thought that I didn't understand him, or maybe he just thought I was stupid. Actually, it was harder to understand him when he spoke like that, and I had to really pay attention. It was funny but I found myself also responding very slowly. And whenever I would have to change doctors, the new doctor would also speak to me veerryy sloowwly.
Years later, a Spanish-speaking case manager began to work at the clinic, and he asked me about any learning disabilities or developmental difficulties I might have. He also asked about my educational level. I asked why he was asking all these questions, and he mentioned that the medical notes from every doctor at the clinic stated the same thing: "suspected mild mental retardation," "suspected psychiatric disorders," "suspected learning disabilities," etc. All this had begun with my first doctor and been copied throughout my medical history with each new doctor.
But no one had ever asked me why I soaked in the tub with my meds. It's what we always did back home -- my grandmother and mother did the same thing. They said the body would absorb the medications better if you soaked in them first. I have many friends who practice Santeria, and when they take herbs, they soak in them first. My family had done this back when we couldn't afford meds. We would get a few herbs together and would either soak in them or have them as teas. I've always done that and it's always given me great results. I've never had side effects from my HIV meds, and I believe it's because I soak in them first. My friends complained of vomiting, nausea, lack of appetite, etc., but I never had any of that.
But instead of asking me why I soaked with my meds, that first doctor just said I was into what he called "witch medicine" -- as he referred to Santeria. He even made fun of me by asking me if I cut chickens' heads off in religious ceremonies. I told him I was Catholic and that we didn't do that in the church. And that was that.
It wasn't until that new case manager came and asked about my beliefs and my customs that the medical notes changed. In fact, he made sure that when I changed medications again, I had enough to start taking them orally and to soak in. He suggested I try not to wait as long before I started taking them orally, because the doctors wanted to see how well they were working as soon as possible. So I began soaking in them for only a week, and by the second week I was taking them orally. My case manager spoke to my new doctors and they never put anything related to mental retardation into my medical history.
I think my culture has been a barrier to my care. I've had friends who began new treatments sooner than me and did better. It angers me that I might have been denied new treatments because the doctors thought they would be wasting them on someone who wasn't taking them properly. Once I told that first doctor that I soaked in my medications, he just categorized me as mentally retarded and never bothered to listen to the rest of my story. I think many Puerto Ricans in my age group soak in their meds, and a doctor should know this and not be so judgmental about cultural beliefs. I know I will never stop soaking in new meds because it works for me.
They should have listened better, instead of sending me off to psychiatrists and learning disability counselors. Having a translator or someone who understood my culture also would have helped. Imagine being categorized as mentally retarded because of your beliefs or language limitations! Now I understand why the doctors spoke to me so slowly. It wasn't my language -- they just thought I was stupid. I felt like I was being spoken to like a child, as if I was dumb and didn't understand much of anything.
Now, if I think my culture or beliefs might have an impact on my services, I speak up, to educate service providers. I have to let them know that I know how to take medications so I'm not given fewer treatment options. And I educate friends who have just tested positive about their own rights.
But when I have to see a specialist who doesn't speak Spanish, I find it annoying if they speak to me so slooowwly. I want to say to them, "Just because I don't speak English perfectly and have an accent, it doesn't mean I'm dumb." I see the same issues with others who don't speak English well -- they continue to be given fewer options or are sent to faraway places that make it hard to access services. Now, when I hear about an injustice like this I make sure I speak up.