As my readers may’ve seen or sensed from the recent comments and content on this blog, I have become disillusioned with the CRE writing project and may decide not to continue writing about my experience as a Crohn’s patient trying to survive outside the Western medical system that was not helping me and was only making me worse. As far as I can tell, this project has not inspired any additional writing or critical thinking on this subject, my posts have not been widely shared or inspired much interesting feedback, and this work has not opened up any additional opportunities for me in the way of writing or activism. Of course, those were not the reasons I started this blog in the first place but they are to be considered when looking into the future of this project and whether it is in my or anyone’s best interest that it continue.
My original intent in starting this project nearly one year ago was to document my experiences as a seriously ill woman for whom conventional medical treatments were not working including the social, financial and health-related fallout of this system that seems designed to control and punish sick people while we carry the blame and shame for Western medicine’s failures and even its lies. At times my health and financial situation have been so precarious that I actually believed (and still do believe) that I am going to die here, alone and in the middle nowhere, and I wanted the truth about what happened to me to be known or at least knowable by those who would wonder what the hell could’ve possibly happened that led to that sad and lonely end.
As I have discussed on this blog, I am a seriously chronically ill cannabis refugee and am facing financial ruin and homelessness due to the last 5 years of medical expenditures related to my diagnosis and treatment for Crohn’s disease, a crippling incurable and progressive autoimmune disease of the digestive tract. After treating for 2 years with Western medical treatments which were not only ineffective but also making me feel worse, I left my partner, my home, my state, my profession and my previous life behind and traveled across the country to seek pain relief and healing through the use of medical cannabis. Thankfully, I have found significant pain relief and some amount of healing from my disease far beyond what conventional treatments had to offer and I am so grateful to have been able to do that for myself. Unfortunately, after more than 3 years of paying out-of-pocket for out of state lodging and cannabis treatments, at this time, I have nearly reached the end of my personal resources to deal with this issue. Due to forces beyond my control, I am not currently eligible for disability- or need-based benefits despite my unfortunate diagnosis, significant disability, negative prognosis and financial need.
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.