I panicked one day when I saw an ad from the supplement company Solaray that read “Food is not enough.” My doctors had told me to eliminate most vitamins, and to get all of my nutrients from food instead. I visited Solaray’s website and discovered the tagline refers to research showing that most Americans are not getting enough vital nutrients like calcium, vitamin D, iron, and folate. However, many of the studies they reference speak more to the imbalance of the American diet and the foods people eat, rather than a lack of nutrients in healthy foods.
Health is nuanced, and that message gets lost in today’s headline-happy world. Complex topics are reduced to rage-baiting headlines, then content creators make short clips that paraphrase them. The result can be a misleading game of telephone. And when you’re living through an illness—and will do anything to feel better or get healthier—you’re vulnerable to the advice that so many strangers are more than happy to give you online. The Internet empowers people to feel entitled to dole out medical guidance but, as Lesse points out, a one-size-fits-all approach rarely works for anyone. “One supplement that might be good for you might not be good for somebody else,” she says. “I think back to a lot of the supplements I was taking before I was diagnosed and I probably should’ve been speaking with [a doctor] about that.” [Allure recommends consulting with your doctor before taking any supplements.]
The prevalence of Internet “experts” can lead to some uncomfortable conversations. “In the last few years I have really noticed the rise in a narrative about autoimmune diseases in particular—that they affect women significantly more because women bear the weight of care, trauma, selflessness etc.,” shares Erika. “My boss sent me a clip of [Canadian doctor and trauma expert] Gabor Mate speaking about this, and now I can tell she thinks my disease is a result of past traumas and burdens in my life. The narrative that something happened to me or I did something to cause the disease is wrong, and wholly unhelpful for me personally.”
There also isn’t a clear definition of what wellness is in today’s world. It’s everything and everywhere—and it’s nothing at all. “Before I was diagnosed with M.S., I thought of wellness as the spa,” says Erica Lieurke, the founder of the Monarch Los Angeles hair salon, who was diagnosed with multiple sclerosis in 2017. Lieurke used to particularly enjoy a sauna session as part of her self-care, but M.S. is triggered by heat so she can’t visit them anymore. “I feel excluded from spas in general now,” she says. “I can’t do massages because the left side of my body is numb. Even acupuncture isn’t pleasurable for me because I have so much neuropathy.”
People experiencing illness can have limited options for health reasons, but they’re also denied services that they want and need. I’ve experienced this firsthand: My surgeon recommended lymphatic drainage to help reduce swelling from my lymph node removal—and provided me with a doctors’ note for the massage therapist—but the moment I mentioned my diagnosis, I was rejected by three spas: “No, we can’t treat you.” “No, you can’t use our products.” “No, our service isn’t for you.” I left confused.
Lesse experienced a similar situation when her doctor suggested she get a massage to relieve stress. She booked an appointment and noted her diagnosis on the intake form, but when she settled into the treatment room her therapist informed her she couldn’t stay. “I was like, ‘Wait, what? My back is in pain and I’m so stressed out. I just want to relax,’” she says. “I explained that my doctor gave me approval to get a massage, but the therapist told me that she couldn’t do it because she didn’t want to spread my cancer. I left crying and cried probably more than I did my entire treatment period. I felt so unseen and disrespected and just misunderstood.” There is no scientific evidence that massage spreads cancer, and many oncologists recommend massages to help patients relax. Still, cancer patients regularly report being turned away.