Talking about ‘changing a culture’ is quite prevalent. Topics range from institutional culture, the effects of Hollywood, anti-vaccine movements, or even how welcoming churches are to visitors. But until recently, I’ve never really understood how difficult that can be.
Early in my time in SL, the massive stigmatization around HIV seemed silly to me. HIV is treatable, the drugs are free, and it’s extremely difficult to transmit just with casual acquaintances or even housemates. If you take the drugs regularly, you can live a normal life. What’s the big deal with the stigma? Why are people so afraid? But the longer I’ve been here, the more I understand.
I’ve heard stories of a wife finding out she is positive, then her and her children are driven away from the husband’s home. Neither her own family nor the husband’s family were willing to house or support her. People lose jobs, churches, and livelihoods. With the prevalence of the disease as high as 2%, almost everyone is acquainted with someone who’s positive. But due to the extremely high risk of ostracization if the diagnosis is public, people keep secrets and so the perceived prevalence of HIV is much lower than what is actual. Which makes it all the more stigmatizing because it seems like a rare disease.
With all of the social pressures, I’ve really started to behave like a Sierra Leonian. Even if the patient is unconscious and on death’s door, I never tell the family about the HIV diagnosis. I will frequently write a vague diagnosis on the death certificate if the family doesn’t know the HIV diagnosis. Those secrets are just too volatile to be rash with. If I have a patient who tests positive, I always bring them into my office to have a one-on-one discussion. But if I suspect a language barrier, I’ll bring along a nurse to translate. And that’s exactly what I did last week. I had a patient who tested positive, spoke a tribal language, and was quite obstinate and wanted to go home. I didn’t have high hopes for the encounter because often people say “I don’t believe your tests. I don’t have it.” And then they just leave the hospital and my guess was that she would be one of those types. But then something happened that surprised me.
The patient and the nurse were bantering in a local tribal language, Temne. It was quite clear that what I had said wasn’t the only thing being told to the patient. But I’ve had this nurse translate many times in the past and I trust her to be faithful to the concepts of my message to the patient. After the dialogue slowed down, I turned to her and asked what she told the patient. “I told her that I have HIV and you can live a normal life if you take the medicines.”
I just sat there aghast. I suspect my mouth was hanging open. Previously, I had no idea this nurse was HIV positive. And not only is she positive, but she just told a complete stranger!
I stared blankly ahead as my brain tried to catch up. Why would she tell this patient her secret? This patient seemed like the type of person who will walk around and blabber mouth what she found out about the nurse.
Words start to form in my mouth, “I had no idea.” But thankfully, my brain edited those words before they came out. Next idea came, “You shouldn’t have told her!” but those were repressed too. Eventually, after painful seconds, I said “Ok, let’s warn her that when she starts the treatment, she’ll initially feel nauseous. But I can give some medicine to reduce the side effects.”
As the interview progressed, the entire demeanor changed. The patient started making eye contact. Her body language opened up. She started engaging and asking questions rather than just giving the flat denials of before. With the addition of trust, the patient seemed like a new person to me.
I just couldn’t get this encounter out of my head. I constantly rage against the stigmatization of HIV, but when there’s a chance to make change my gut reaction is fear for my staff whom I care about. It’s like I want things to change, but I hate to see my staff risk themselves. The hypocrisy (maybe cognitive dissonance?) of that really has been eye opening for me. It’s a beautiful reminder of what true healing looks like as well as an example of how far I need to grow still. I may have more education than some people, but that doesn’t mean that I’m qualified or capable to provide healing. The healing this patient needed was trust. Something I might not have been willing to give.
A positive change in the culture is impossible with an attitude of fear like I had. But I thank God that he puts his people in the right place at the right time to bring healing to His children. It was truly humbling and inspiring to see that in action through that nurse. I pray that God will send His Spirit on all of us, that we can be like that nurse and have the courage and trust to do what’s right.
Addendum:
In residency, while studying how powerful placebo medicines are, I thought it would be great to be able to just give patients placebo tabs. It’s a harmless intervention that absolutely helps. Today, I just realized somebody gave me placebo.
I showed my essay above to the nurse in question. I wanted to get her permission before posting something so personal. She responded, “I don’t actually have HIV. I just saw that she needed trust and confidence, so I lied and told her I did have HIV. We might have saved a life that day.”
What‽ I totally believed she had HIV. But just like I sometimes want to give patients sugar pills, apparently this nurse saw that this patient needed ‘sugar trust.’ It never even crossed my mind that faking vulnerability to gain trust would be so therapeutic. But wow, lying to a patient about my own condition certainly feels a lot different than prescribing sugar pills as placebo. I’ve got a lot to think about these days.
