Has a sick person you love gone down a medical conspiracy wormhole? Here’s what to do, writes Hannah McElhinney, whose new book Wormhole is out now.
The Dangers of Alternative Medicine for the Chronically Ill
Those with chronic health conditions and invisible illnesses can be particularly vulnerable to exploring dangerous alternative medical treatment. For women, starting around their mid-30s, discussing wellness trends and treatments with female friends becomes part of a shared quest for better health. With medical biases and discrimination eroding trust in mainstream medicine, many remain vigilant for anything that may help them feel better.
What to Do When a Loved One Pursues Dangerous Regimens
My family has grappled with this question for four years since my cousin Lauren was found in a coma in Malaysia after a risky treatment for chronic Lyme disease. She died two days later at age 37. I wrote Wormhole to examine the forces that led her down this path. Here are the best tools I believe we have to protect others.
Don’t Shame Loved Ones Into Concealment
I rode shotgun with Lauren as she explored outlandish treatments. I scoffed at her views on vaccines and called her an anti-vaxxer without questioning how her fibromyalgia and ME/CFS may have led her to lose trust in medicine. She kept many treatments secret because she knew her family disapproved. Using judgmental language like “quack” or “anti-vaxxer” inhibits productive conversation, even if accurate.
Believe Women’s Pain and Symptoms
Female pain is consistently underestimated compared with male pain, and conditions like endometriosis take six to eight years to diagnose. This erodes trust in medicine and leads sufferers to seek alternatives. Remaining resolute in believing a loved one’s symptoms and supporting them to find affirming care can ensure safety against exploitative practitioners. Offering a heat pack or running an errand sends the message that pain doesn’t need to be seen to be believed.
Follow the Money
In alt medicine, “follow the money” often refers to Big Pharma profiting from keeping people sick. But the same applies to alternative medicine, projected to be worth US$1,282.70bn by 2034. Many purveyors charge exorbitant subscriptions for supplements and video calls. Studies backing their claims are often conducted by the company and not peer-reviewed. One company sold Lauren non-standard tests showing she needed six more months of treatment. Preying on the chronically ill is lucrative, and exploitative practitioners reveal themselves when doubt is expressed.
Stay Tethered
Alternative practitioners would tell Lauren her family was unsupportive when they refused to pay for high-risk treatments. The only way to stop loved ones being swept away is to stay anchored, even when they push us away. But even then, it may not be enough. My aunt did everything she could, and no one should carry the burden of wondering what they could have done differently.
This is a systemic problem. If we don’t address medical misogyny, misinformation, and wellness culture, others will meet Lauren’s end. Until then, it’s left to family and friends to validate, listen, and support each other to find quality care while keeping open communication about risks. Continuing to discuss health over coffee might be the best thing for us.
