When I was first creating and launching this project, I researched what was already out there with regard to Crohn’s and cannabis blogs and I found that there are easily hundreds of thousands of each and that they are heavily corporate sponsored. Big Pharma sponsors (or creates) Crohn’s and other disease and “health” related blogs in order to push their corporate propaganda, in this case, the propaganda that Big Pharma voodoo is effective and easily, completely and permanently treats Crohn’s disease. But patients know better, and if you want to hear their voices you have to dig pretty deep, beyond the heavily promoted fake astroturf and down to the grassroots — grassroots meaning the voice of the truly independent media, regular people who are telling the truth about their experiences because they have no incentive to lie.
These “real” Crohn’s patient stories are only found on people’s independent personal channels, blogs and vlogs and are not sponsored and are not part of a larger “project” on Crohn’s disease, IBD, healthcare or alternative healthcare, or the like. The Crohn’s project channels are tricky because they seem to be hosting the stories of “real patients” (TM) but one cannot help but notice that they speak exclusively positively about their disease, their conventional treatments and their lives as sick people and reliably downplay the negatives, such as framing iatrogenic illnesses and injuries caused by the treatments themselves as “hiccups” and the various surgeries, procedures and complications they have anyway despite their allegedly effective conventional treatment as just #crohnslife and you will find those kinds of stories on YouTube channels with names like: Living with Crohn’s Disease. Crohn’s and Colitis UK. Real Life Stories. Life with IBD. Avoid those and anything similar to those like the corporate-sponsored astroturf they are.
The cannabis blogs are just a hot mess from what I can tell, they are heavily sponsored (or created) by corporate cannabis interests but they also can’t legally make claims about the medical use and effectiveness of any cannabis product to treat disease. So these astroturf “blogs” are just reblogs of peer-reviewed medical research without commentary, interviews with rich white people who were able (somehow) to invest in corporate cannabis when it’s still against federal law and there are banking and money issues involved, pretty pictures of the insides of medical and recreational dispensaries, behind-the-scenes of massive corporate cannabis growing facilities and the like.
These kinds of blogs are nothing more or less than what they are — social media marketing for corporate cannabis interests — and should be treated accordingly. There are some independent YouTube channels documenting people’s treatment with medical cannabis but for the most part, treating with cannabis is a solitary affair necessitating months and even years of costly trial and error where a sick person may have to liquidate his or her assets in the pursuit of relief, but in the end the treatment is often not sustainable anyway. When I see these blogs and vlogs for what they are — either corporate propaganda or highly individualized treatment experiences — I begin to wonder whether there is any useful information available at all on medical cannabis, including what patients can reasonably expect when they begin their journeys to find relief and healing this way.
There are literally thousands of individuals and families in my exact predicament who had to travel across the country to legally treat with medical cannabis and may have found some degree of success — these people are known as cannabis or marijuana refugees. Surely some percentage have experienced what I have and lost everything in their pursuit of healing and relief and are now destitute, unable to continue treating for much longer and facing homelessness and worse. I have caught glimpses of these people and their stories in my travels but when I try to search for anything specific I can’t find anything; searches like “lost everything due to medical cannabis” return no results. Their stories — if they even exist — are buried under miles and miles of astroturf or useless individualized vlogs, or 2-minute local news clips about the “cost” of medical marijuana but without commentary are basically weird thought-terminating propaganda, like this:
Ok, so….what? Medical marijuana is a good thing, but people can’t afford it so they just go back to their $7 Walmart pharmacy Percocet knockoff like it’s no big deal? Of course, Percocet and other opioids and opiates are not prescribed for Crohn’s patients because they cause gastrointestinal distress, and the current social conversation around opiate and opioid addiction prevents doctors from prescribing opioids and opiates for chronic pain. What are those people supposed to do, and what do they do when they cannot afford treatment with medical cannabis? These questions are never asked or answered.
There are also piles and piles of blogs, vlogs and news clips asking and answering the question of medical marijuana’s effectiveness in treating disease, but this has been settled where there is plenty of peer-reviewed medical research, not to mention thousands of years of human history and experience, showing that cannabis is effective to treat a variety of ailments and does so without notable side effects. So why is there so much media and social media real estate dedicated to asking and answering a question to which the answer is already known? In this clip, a family with a seriously ill child moved to Colorado to get her treatment with medical cannabis. Unsurprisingly, it worked. What happened next is never said:
I’m happy for this family sure, and I’m glad this child was taken off harmful Big Pharma poisons that were probably only making her worse (and which, ironically, were making her “stoned.”) But there are piles and piles of these testimonies everywhere. What value is another one to anyone? And why didn’t they ask or answer the question of whether their plan to relocate the family to a cannabis legal state to treat a seriously and likely permanently ill person with medical cannabis was sustainable over time? I’m sorry but this clip is useless, it’s fucking useless and I want my 6 minutes back.
Despite the utter uselessness of corporate Crohn’s and cannabis blogs, vlogs and news clips, in the first couple of weeks after this project went live I got almost no traffic and I couldn’t even find my own posts in Google unless I searched using the exact title enclosed by quotation marks. Over a month and 30 posts later, I still can’t. The social media and blogging “market” as it were is completely flooded with corporate Crohn’s and cannabis channels — and redundant or thought-terminating news clips — which absolutely dominate the search engines and bury original, interesting content created by actual independent people.
At this point I am only assuming such content even exists and it may in fact not; the best I have found have been the online Crohn’s patient forums and Crohn’s disease origin stories (and the RA Warrior blog) where people reveal that, despite miles-deep Big Pharma propaganda asserting otherwise, in reality, autoimmune diseases do not respond, respond well, or respond for long to conventional medical treatments that only make them worse. Most of these people for whatever reason still consume the conventional treatments though, whether it’s to fulfill and maintain eligibility for disability-based benefits, to please their families, because they simply don’t know any better, or because they are too ill and too exhausted from years of medicalized abuse and chronic illness to even care anymore.
Where are the radical, politically informed voices in the cultural conversation of either cannabis or Crohn’s disease? As far as I can tell, there really aren’t any. It is truly infuriating to me that the voices of seriously ill people are not a part of the cultural conversation that doesn’t merely “affect” them but controls and conscripts their entire lives without their input, and without politically relevant input made on their behalves, where sick people are often too ill to speak or advocate for themselves. Now that I am seriously chronically ill, I no longer fear the things I used to like “losing it all” (done that) or even male violence including rape, except for the part where I would more or less require Western medical intervention to mitigate the damage. For me now as a seriously chronically ill person whose illness did not respond to conventional treatment, the main thing standing in between me and the rest of my life is not “men” but the capitalistic patriarchal institutions of medicine and law, where I am ineligible for disability-based benefits because of the 3-year gap in my conventional medical records that began when I abandoned the conventional treatments that were killing me and sought alternative relief and healing with medical cannabis.
And I am particularly concerned knowing that my Constitutional right to refuse unwanted medical care seems to end where the capitalistic patriarchal state’s right begins — the right to control and conscript the behavior and movement of chronically ill people who are unable to control their behavior or affect due to intractable pain and disabling symptoms of disease. In my case, if I am forced by poverty, homelessness or another reason to abandon my successful treatment with medical cannabis, I will be unable to avoid jail, the hospital or both because I will be in too much pain and extreme physical and emotional distress to toe the line of socially acceptable behavior. And not just a generic “good citizen” line but the sex-specific line where particularly females are in danger of being incarcerated or psychiatrically incarcerated for violations of social decorum and feminine behavior and affect, and publicly shitting oneself and becoming increasingly physically and emotionally distressed because of the hideous and progressive symptoms of un- and undertreated Crohn’s disease would seem to be on the wrong side of that line. And being alone without supportive or understanding family and friends to shield me from forseeable outcomes there will be no avoiding it.
Although I only practiced law for about 6 years before I became ill, I’ve been either a law student or attorney for the past 17 years and because of that background and perspective I can easily see what’s coming for me — the hospital or jail or both, where both institutions can and will force unwanted Western treatment on me that I already know won’t help and which will only make me worse, necessitating more (never less!) interventions and incarcerations and so on. Surely, having barbaric misogynistic medicine forced on you while you are also incarcerated has to be one of the worst fates imaginable and that is exactly where I’m headed. And that story is being buried by a mountain of “other” less interesting and notably less political Crohn’s and cannabis-related garbage where no one will ever find or see it unless they already know where to look.
Of course, as a somewhat seasoned social critic, I have to wonder why that is, whether it’s deliberate, and what other stories and perspectives are likely being excluded from the cultural conversation that affects so many of us, whether we are seriously chronically ill ourselves, know someone who is, or for those who just want to know the truth about the world we live in, how it operates, who gets either supported or destroyed by it, and why.