Ba-doop. A notification pops up. It’s an old friend: “Hey, Brad. How are you? It’s been so inspiring following your journey!”
“Aw! I’ve been doing great, thanks.”
Abruptly: “So, I know of a fantastic product that could really help your disease. If you buy through me, you’ll get a discount. Interested?”
This isn’t one particular conversation. Rather, it’s a script that’s followed by old friends who dropped off the face of the earth eons ago and emerged spontaneously from whatever netherworld they disappeared to … to vend their wares. Roots, herbs, powdered horns, essential and nonessential oils, neon-colored drinks. Even things to smoke. No, really.
I reply that CF is a fickle monster, requiring precise treatment under the direction of specialists who can predict the path of disease. CFers don’t have cookie-cutter characteristics in their gut and lung microbiome; the bacteria have different sensitivities, and more than 1,700 mutations can cause the disease. We’re also consuming an arsenal of pills, IVs, and inhaled medicated vapors. And each of those medications has myriad interactions with other substances. Doctors make mistakes. But I, a 24-year-old with journalism and history degrees, don’t think I can regularly outsmart MDs in big-boy science.
Put simply: My disease is complex, so I trust my doctors over “unregulated witchcraft.” (CF advocate Gunnar Esiason recently dubbed alternative medicine with that phrase.)
Sometimes, the salesperson has the gall to imply that my doctors are always wrong. “Screw their near-decade of schooling! Screw their many decades of experience! I’ve been selling my product for two weeks, and I know I’ve got the cure for your genetic misfortune. I’ve outdone the millions of dollars poured into cure research by foundations.”
That’s hyperbole, by the way. No one actually said that. Or, at least, not that directly. But it’s implied when they lecture me on how the tendrils of Big Pharma have ravaged my body and how doctors allow it. I’m sitting there, completely deaf because of antibiotics, getting informed about how medications can goof me up. Trust me, I know all about antibiotics being sucky.
The salespeople try to undermine my confidence in my team. They tell me to turn my back on my team. I’ve been encouraged to drop all medications I was doing for a single supplement. When I told one person I could be kicked off the lung transplant waiting list if I took what he was pushing on me, I was told I didn’t need to listen to people who destroy bodies for a living.
I think that’s the underlying problem with many of these people. They think doctors are rage-filled slaves to Big Pharma bent on demolishing our lives (motivation: unclear). Sure, some doctors entered the medical field to make money rather than help people (like some of the “alternative medicine” salespeople). But the majority of them truly care. If you have a doctor you can trust, I encourage opening dialogue: “Why should I not take this particular product?” Instead, many CFers go behind their doctors’ backs and consume substances that end up worsening their conditions.
I think we have the right to try alternative medicine if we feel we’ve run dry of options. If you throw your pitch to me, and I express interest, by all means, continue. But I think we also have the right to say, “Nah,” and not be pestered about the topic any longer. Frankly, CFers are worried about their disease’s wild inconvenience, about competing with peers in an unequal society, about dying. If you prey on our vulnerability for profit, shame on you.
I’m not gonna blow off all alternative medicine out there. There’s merit here and there. Lavender essential oil worked wonders for my anxiety. Curcumin cooled down my inflammation. I believe, without direct evidence, that allicin capsules helped suppress my Pseudomonas. Heck, my column next week will be about marijuana’s potential benefit for CFers.
But I only tried these things while keeping open with my doctors. There were a couple of supplements I wanted to try, but my pharmacist told me other medicines I was on could have nasty interactions with them. What if I did what alternative medicine “salesfriends” said I should, and decided to take those things without conferring with my medical team? That would have been unfortunate. Or simply unwise, I should say.
I once wrote a story, “Reptiles, Fungi, Needles,” about traditional Chinese medicine shops. One of the men I met refused to do an interview but offered a diagnosis for a cough I had. He didn’t speak much English, so he motioned for me to stick out my tongue (to analyze the color, I assume). I obliged, despite knowing the grape Gatorade I drank at lunch likely discolored my tongue.
“Very sick,” he said. He picked up a canister of herbal tea. I waved it away with a smile.
If he had seen my CT scans and the literal holes in my lungs’ tissue, even he might have acknowledged tea wasn’t going to do the trick.