Since my diagnosis with and failed conventional treatments for Crohn’s disease I have gotten a lot of comfort and knowledge from reading various online support forums for Crohn’s patients. It was there that I realized that I was not alone in my diagnosis, symptoms, multiple treatment failures or feelings of hopelessness, despair and what was becoming a seething and visceral hatred and resentment toward the medical community for failing Crohn’s patients and other chronically ill people so badly. Some forums are even tolerant if not enthusiastic about hosting discussions about medical marijuana for Crohn’s patients which I appreciate. Most of all I take solace in reading the forums because the participants are real people expressing themselves honestly and often tackling taboos, perhaps the biggest of which is the taboo against disparaging medical treatment, healthcare providers or the patriarchal capitalist medical industry in any way. Because if you aren’t even allowed to think or discuss negative thoughts about Western medicine and its treatment of Crohn’s how will you ever think about or discuss alternatives? If Western medicine is put on a pedestal and beyond reproach, what choice do patients have but to blame themselves when their treatments fail to help them and oftentimes actually make them worse?
I think the forum participants are mostly able to be honest because they aren’t doing it as a job, they aren’t trying to build a following on social media, or get clicks, or sell advertising so they do not have to toe the line of playing nice with the medical system that is oftentimes torturing and even killing them. Not so with the Crohn’s blogs. “Hawt girl with ostomy” seems to be a particularly popular genre in Crohn’s blogging and social networking as is the “Crohn’s Tragicomedy” where graphic bodily and medical horrors, daily indignities and even medical malpractice and abuse are reduced to memes. Indeed, every Crohn’s blog I have seen evinces uncritical consumption of medical goods and services (and fuckability mandates!) that are resource intensive, barbaric and dangerous; do not work, or for long; and often make patients feel worse. And while I can see the draw of lighthearted Crohn’s blogging-for-profit — it is light-duty flexible work and a good fit for the chronically ill, and it feels good to laugh — I have learned that making light of issues with political and material implications is just not a good idea in a long-term big-picture kind of way. It minimizes, normalizes and invisiblizes the harms, lets the perpetrators off the hook, and extinguishes victims’ hard-earned righteous rage.