We Need to Talk About Preying on the Chronically Ill
When you’re down, you’ll try anything to get out.
I had Chronic Fatigue Syndrome (CFS) for over two years.
Even though I was only 24 when I got sick, even though I was a health nut in the years leading up to my illness, even though I had better wellness habits than most people I knew. I wasn’t invincible.
After I first developed unusual symptoms, a 6-month process with my medical group went like this: a PCP visit — thousands of dollars in blood work, including a $900 test for Tuberculosis that I didn’t ask for —a referral to a rheumatologist — more blood work —a referral back to my PCP. I went in a large circle, and the only thing I had to show for it was a lot of blood work results that didn’t point to a clear problem, and lots of medical bills.
When my symptoms persisted, I turned to functional medicine. It took another six months to understand what was wrong with me.
Blanket diagnosis: CFS.
Co-infections: SIBO, histamine intolerance, food intolerances, and more.
Many of the issues I faced aren’t mainstream. They likely won’t ever be, given that only a small percentage of the population ever deals with these problems.
CFS is a tricky illness, though I suppose most chronic illnesses are. There is no silver bullet to cure CFS. No medicine you can pop once a day that mitigates the symptoms, no clear-cut answer on why people end up with CFS.
For the first time in my life, I felt hopeless. I wondered if I would ever get better. I feared I’d never be able to walk the dog, take a hike, or do any of the things I loved again. After a long pity party, I regrouped. I had to look forward, even when my future felt as bright as a white dwarf.
While working with my practitioners, who made it clear that it would be a trial-and-error process to figure out how to heal my body, I took matters into my own hands. I listened to medical podcasts, whose target audience was doctors, went down a research rabbit hole, and got lost in the internet to try and find solutions to help me feel better.
In that rabbit hole, I ended up on Instagram. I found multiple profiles of people in the chronic illness space, touting “certified nutrition specialist” or “medical doctor — functional” or “sharing health experience of 20+ years.” These women (because I only sought out females) ranged from doctors with medical degrees to influencers with opinions.
Each of these figures pushed various cures to common ailments I, and based on the comments and engagement level, other chronically ill folks were experiencing.
Had I consider that my water was full of contaminants?
Did I know that sunscreen was bad for me?
Had I researched the effects of vaccines on my body?
Was I using oxidized water to wash my produce?
Did I know that mold could stick to my clothes and belongings — that even if I left a moldy environment, the mold would move with me?
How often had I relied on antibiotics in my life?
Why hadn’t I added a green powder supplement to my regimen?
When scrolling through the stories, highlights, and posts of these pages, I was overwhelmed by information. Anxiety arrived in my body, with a tightness pulling in my stomach. The prevalent thought was that I wasn’t doing enough — no wonder I was sick. I needed to reconsider everything: the makeup I wore, the water I drank, the EMF radiation I absorbed from my technology.
I had a major reaction, and that’s coming from someone who had already been paddling in the deep end of the wellness space for years. So, I can’t imagine how a person who eats a Standard American Diet or has never exercised a day in her life would feel.
I was overwhelmed and anxious while scrolling these pages, but I was sucked in, because these pages promised me that if I changed my ways — and used the products they happened to have affiliate links for — I would feel better.
And if I haven’t made it clear by now, let me: I was desperate.
My progress was non-linear. I started off with a functional MD, but when it came to the point that I was directing my treatment more than her (thanks to all those medical articles and podcasts I’d consumed, worth noting) I switched to a practitioner with ‘MS,RDN,CD’ at the end of her name. She specialized in several of the issues I was struggling with, which is why I trusted her, and she even created a common diet used to help those with histamine intolerance and other health ailments. Some months, I saw substantial changes in my symptoms. Others, I felt even worse. Progress when facing a chronic illness is a fickle thing.
These pages pushed ideas I hadn’t heard about in my extensive research: coffee enemas, nebulizing, red light therapy, parasite cleanses, castor oil packs, the list goes on.
This meant I was left to sort through and play a fun game: bullshit or legit?
Example: using a sauna.
Across all the pages, everyone waxed lyrical about saunas. A bit of googling told me that saunas have been around since 2,000 B.C. There was legitimate research that supported the health benefits of sauna, though the research was murky around the idea that saunas released toxins, a common sentiment from the health ‘experts’ I followed.
I decided to invest in one. Everyone had an affiliate code for their favorite sauna: ones that were shaped like sleeping bags, giant wood ones that took up a lot of space, or small, pop-up ones. All were over a thousand dollars, some were several grand.
I was privileged enough to be able to afford functional medicine. None of my visits were covered by my insurance plan. My supplements weren’t eligible for my FSA, though blood work usually was.
In the two-and-a-half years I was sick, I’ve estimated that I spent over $15,000 on medical visits, tests, supplements, and solutions. Being chronically ill is expensive.
While I could pay for these things, I wasn’t in a position to shell out a thousand dollars at the blink of an eye for a sauna. After doing some research, I ended up finding a pop-up, transportable sauna on Amazon for $150. It probably gave off more EMFs, and it probably wasn’t as nice as the ones that were 10x the price, but it got the job done (and for what it’s worth, it helped me, and I recommended it to several friends).
What made me feel yucky was seeing these pages push products I knew were of the MLM-family, or felt like it: DIME beauty, BeautyCounter, Doterra, et cetera. I had to consider that these people made their living by sharing affiliate links, and convincing you that you need Organifi, Athletic Greens, Kion Coffee, whatever.
More than once, I stared at a website page, debating. Did I need a $60 green juice powder? A $2,400 somavedic to combat EMF? A $1,200 red light?
My frugal side said no, as did the existing pile of medical-related expenses. But I debated. I questioned: would this be the silver bullet I so desperately wanted?
This isn’t to say that all of the tools these pages promoted are fluff. I benefited from saunas, red light therapy, castor oil packs, meditation. I learned from these pages, but I had to consciously avoid taking everything they said as bible.
It would’ve been so easy to spend thousands of dollars on these products. But they aren’t necessary to heal, and if they are, there is usually a more affordable way to benefit from them.
Being chronically ill makes a person vulnerable. When life becomes harder than ever before, desperation seeps in. When no one can relate to what you’re going through, you find solace among the strangers who can.
There is value in these communities. I’ll reiterate that. But it can be difficult to understand where the value lies, and who really benefits from these pages.
You just read another post from In Fitness And In Health: a health and fitness community dedicated to sharing knowledge, lessons, and suggestions to living happier, healthier lives.
If you’d like to join our newsletter and receive more stories like this one, tap here.
