Why alternative medicine is dangerous - a personal story of #InflammatoryBowelDiseaseIBD
Alternative medicine is a term that broadly describes a medical philosophy and associated treatments that operate outside of science-based medicine. These include homeopathy, "energy work," herbal remedies, naturopathy, and more.
It is a radically different way of looking at nature and the human body that is not grounded in the rational methods that built modern civilization. This is a problem.
These days it is trendy to complain about doctors and many other aspects of modern life. These features of modernity are indeed imperfect, but they are still remarkably effective tools for solving human problems despite their flaws. Rationality is unfortunately becoming a buzzword that is associated with “toxic masculinity” and “patriarchy” and “oppressors” but it shouldn’t be. Rationality is for everyone, even if historically it did not always lead to good for everyone. We can always do better in how we apply it, but the tool kit itself is essential.
When I was young, I was very much taken by the philosophy of #Alternative #Medicine . There is a spectrum along which most people fall in their attraction to it. I was on the far end of the spectrum, taking it’s philosophy very seriously. You could, in a sense, compare me to a religious fundamentalist in how I approached the holistic life. But, I was only listening to what I was taught. I lived out the reality of taking these views to their logical ends.
One of the views in alternative medicine is that we can heal ourselves with intention. I have addressed that claim in another Mighty post. I believed very deeply that I could do this, and it failed catastrophically. Another alternative medicine article of faith is a deep distrust of pharmaceuticals, hospitals, and surgery. These things certainly have their flaws, but like rationality, they still solve quite a few problems pretty effectively despite these flaws. Nevertheless, I was a true believer, and followed suit in my distrust.
When I was diagnosed with #UlcerativeColitis , I’d been involved in the alternative medicine community for just a few years. I am on the #AutismSpectrum and am prone to depression, #Anxiety , magical thinking, and emotional dysregulation in general. I was, unfortunately, a perfect target for the magical thinking and emotional reasoning of alt med. I was also young, getting turned on to these ideas when I was only 20 years old by friends I met playing music.
I didn’t take my diagnosis well at all. I was furious with having to take prednisone, and any drug at all, and was even more horrified that the cure to this condition was a total removal of my colon. Alt med practitioners worship the colon. “Death begins in the colon” was a phrase often repeated. I took this to mean that no colon meant no chance of health. The other medications they offered me were, in my opinion at the time, no better than steroids because they all suppressed my immune system. Alt med practitioners worship the colon second only to the immune system. The immune system can solve everything – you just needed to make sure to “boost” it as much as possible. So the two treatment approaches for my disease were unacceptable according to my religion.
I fought doctors left and right. Reading through my medical records from those days, circa 2003-2008, was like reading a horror story and a dark comedy all at once. I was an irritating, immature know-it-all, combative and non-compliant, refusing any and all treatments, trying to “teach” the doctors what they supposedly didn’t know about medicine. Unfortunately, my natural treatments did not really work. So every time they would fail to maintain my remission, I’d land back in the hospital again and put on prednisone because it was the only thing that could get me out of the emergency state.
I spent 7 years bouncing between natural treatments and hospital trips. This had the unfortunate consequence of me being on prednisone for most of that time. Prednisone also takes some time to leave the body once you finish tapering off of it. So most of the times when I thought my diet or other therapy was “working,” it probably wasn’t. The prednisone just hadn’t left my system yet. Once it did, the flare would start again, and I’d be right back on it.
Years and years of prednisone is not how UC treatment is supposed to work. You go on prednisone to get out of the emergency state, and then you taper down to safer immunosuppressive drugs such as biologics or chemotherapy drugs. At the time, you might as well have called those things “rat poison” and “nuclear waste” because that is what they were to me. My immature mind was completely taken by alt med at that point and I would not listen to reason. “Reason,” to me, sounded like “entrenched party-line thinking of doctors who were territorial about their authority.” My support system at the time, from my family to my extended friend networks, were various shades of sympathetic to alt-med beliefs and there really was nobody to provide a counterpoint. Giving up these beliefs meant giving up my entire support system – and my identity, which was increasingly wrapped up in the idea that I’d cure myself and then be famous and go on talk shows telling everyone how I did it.
I had a particularly traumatic trip to the ICU in the summer of 2008 where I had apparently let my UC flare go on for so long that I developed abdominal sepsis, something that kills 1 out of 3 people who have it. The reason I left my flare untreated was because some scientist-impersonators on the internet had convinced me to try their treatment, which they claimed would cure my disease by killing some mysterious type of bacteria that had never been visualized, measured, or cultured in any way. Part of the recovery involved feeling worse. So feeling worse was good! So I need to just stay the course and don’t go to the hospital, because “they will stop your treatment, put you on immunosuppressive medications, and you’ll never get well.”
I listened to them until it was almost too late. My parents were happy to let me keep doing this because they thought I knew what I was doing. I didn’t. Eventually, even they started to wonder if this whole thing wasn’t going well and if I needed to be hospitalized. Thankfully they took me just in the nick of time.
Today, I am 43. I have no colon. I eventually had to give in to the surgery because the UC was so out of control even prednisone didn’t really work that well anymore. I had a three-stage operation to get my J-pouch. I was well for a decade following. But, I lost my ability to have children naturally, and my metabolism is permanently wrecked from all the crash/fad dieting and all the hospital-prescribed fasting.
But, the worst lingering effects is the permanent damage 7 years of nearly constant prednisone. Today, I am a healthy weight, eat well, and exercise, but I developed non-alcoholic fatty liver disease. The etiology of this appears to be unclear, but some studies show that ulcerative colitis is an independent risk factor for NAFLD. One of the possible mechanisms proposed is chronic exposure to steroids. Furthermore, another study suggested that biologics, the drugs I was so petrified to take, are not associated with fatty liver.
NAFLD is not curable. I can tighten up my diet and workout regimen, but because I do not drink and I’m not overweight, there’s only so much I can achieve with lifestyle modifications now. It can progress to cirrhosis if this doesn't work.
Alternative medicine polluted my head with unhealthy, irrational ideas that prevented me from getting the treatment I needed to prevent some of the worst outcomes, and now I, and those who love me, will pay the price in the long term.