In Part I of this series, I described the mind- and body-shattering symptoms of Crohn’s disease, a crippling autoimmune disorder of the digestive tract that also causes systemic effects like joint pain, skin eruptions and fevers. In Part II, I described the horror of Crohn’s treatment which apparently one has to actually experience in order to understand or empathize with. In my experience, which I have seen mirrored in many online support groups for Crohn’s patients, the accepted treatments for Crohn’s are often brutal and offer minimal or no relief. Furthermore, with its toxic Big Pharma poisons, invasive tests and risky surgeries, Crohn’s treatment often causes “side-effects” — including medical trauma — that are as bad as or worse than the disease itself. In both parts, I hope to show how desperate and hopeless a situation I was really in as a seriously chronically ill person who was not responding to conventional treatment. From there, I will let the reader surmise what would have been an appropriate response from friends and family and hope that they are able to provide that considered, appropriate response if one of their own friends or family members fall ill, and to understand that they themselves are unlikely to receive the same considered response under the same conditions and to be prepared. Being let down by the very people who are supposed to be there for you is a devastating blow.
In this Part III, I will describe how I made my escape from the patriarchal capitalistic medical industry that was literally killing me. By poisoning me through toxic Big Pharma medications that didn’t work anyway, or not for long; creating additional medical trauma through invasive tests and painful side effects; and through the benign or willful neglect of an industry that frankly had no idea how to effectively treat my disease and was not legally allowed to prescribe or recommend cannabis despite its known efficacy in treating Crohn’s, my health and well-being were declining at a frightening pace even though I was a compliant patient and was supposedly doing everything right. After 2 years of suffering with only more suffering to look forward to, and no relief in sight, I packed one suitcase and made a reservation at a vacation rental property in a cannabis-friendly state where I had planned to stay for 2 months and heal myself with medical cannabis. 3 years later, I am still here and facing a terrifying and uncertain future as a seriously chronically ill cannabis refugee.
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.
In Part I of this series, I described the mind- and body-shattering symptoms of Crohn’s disease, a crippling autoimmune disease of the digestive tract that also causes systemic effects like joint pain, skin eruptions and fevers. Since getting my Crohn’s diagnosis, friends and family members have spoken and acted in such ignorant and hurtful ways towards me and my situation that I have unapologetically cut off contact with almost everyone I know. I just didn’t have the physical or mental stamina to deal with their hatred or to correct their misperceptions about me, my disease or my “new” life complicated by serious and debilitating chronic illness. When I say “hatred” I am referring to hate as a verb: the process and practice of othering me, my body, my experiences, my needs and my life. I am sure if anyone asked them if they hated me they would say they didn’t, not in the noun-sense of feeling hateful emotions towards me. But in the political, material sense, othering is hatred — the kind of hatred that civil rights groups have actively resisted and sought to eradicate because othering causes disenfranchised people to suffer and die when their needs, desires, interests, perspectives, histories and calls for justice are roundly ignored.
In this Part II, I will describe the horror of Crohn’s treatment which apparently one has to actually experience in order to understand or empathize with. In my experience, which I have seen mirrored in many online support groups for Crohn’s patients, the accepted treatments for Crohn’s are often brutal and offer minimal or no relief. Furthermore, with its toxic Big Pharma poisons, invasive tests and risky surgeries, Crohn’s treatment often causes “side-effects” that are as bad as or worse than the disease. For example, an immune-system obliterating series of infusions was the next weapon in my gastroenterologists’ arsenal and is known to cause opportunistic infections, cancer and even death.
“Consume, conform, reproduce, obey” is a reference to the 1988 American science fiction film “They Live” which suggests that subliminal and other cultural messages essentially program people to behave in certain ways which benefit the state and for-profit corporations. Although the film was fictional, there is an excellent case to be made that it was also based on real life and the real experience of human beings existing under the brutal systems of capitalism and patriarchy. Here, we are expected to conform to society’s rules with an alleged “greater good” prioritized over the needs of the individual; to obey the mandates of our elite corporate and public overlords created by them to benefit themselves at our expense; to reproduce if we are able and to seek medical assistance to conceive if we cannot; and of course to consume as many products and services as possible which generates income for the most wealthy and powerful among us. Most able-bodied Western people do these things without thinking too deeply about them or they do it for as long as they physically and mentally can. But what happens when, due to a serious chronic and debilitating illness or injury, we are no longer able to conform or obey because our illnesses direct our lives? What happens when our ability to consume is hampered because we no longer have an income?
Here, in the face of serious and disabling illness or injury, the coercive reality of our station is writ large: the new role to which we will conform is that of a professional patient; we will consume medical goods and services whether we want to or not and whether they improve or further damage our health or not; and we will obey this mandate or, without means to supply ourselves with food, shelter or the necessities of life, we will be left to die. This is the foundation and essence of the disability-based benefits structure and it is very real indeed. As a seriously ill Crohn’s patient, this is my current (and likely future) station and I am furious about it. Recognizing my immense vulnerability as a disabled person I am also saddened that it has come to this, horrified that I will be unable to stop it, and terrified for my future.
I started having noticeable issues with gastrointestinal symptoms and food intolerances early in life, if you can call diet sodas and artificial sweeteners “food.” I was about 12 years old when NutraSweet went on the market. It became immensely popular and was used in the diet sodas and sugar-free candies and gums all my tween-aged friends were drinking, eating and chewing. Personally, I couldn’t stand the stuff. It made me nauseated and bloated and made my mouth water sickeningly. Over the years, other so-called sugar substitutes came to market and I tried them all, but every one of them made me sick. My grandmother’s Sweet n’ Low was clearly poison and I never touched it. As for reacting badly to actual real food, that didn’t start until later.
In my experience as a Crohn’s patient, besides the agony of the disease and the difficulty and energy expenditure of finding effective treatments, the ignorant and hurtful things blurted out by friends and family members have perhaps been the hardest thing to deal with. (Oh, and the looming homelessness! But for me at least, the major financial difficulties came a bit later.) The demented things people have said to me started early on and it caused me to perform a snap evaluation of the relationships in my life, as that was all I had the energy for, and I decided I would rather just be left alone. 5 years later, I do not regret my decision to cut ties with almost everyone who I had previously thought cared about me. For some reason, they could not or would not grasp what I was dealing with and their constant drains on my time and energy were making me feel worse.
Firstly, I have to clearly state the following: this blog is not intended to constitute legal or medical advice. As an attorney and an American citizen, I have a First Amendment right to free speech, and I am exercising it here. These are my thoughts, experiences and perspectives meant for entertainment purposes only. If you are seeking legal advice, please contact the Bar Association of your state of residence and ask for a referral for your issue.
The last day of my life was sometime in February, 2013 the day before I was first diagnosed with Crohn’s disease, a progressive and incurable automimmune disease that targets the digestive tract. As many people with Crohn’s probably know, and as none of us is allowed to think or say out loud, your life is essentially over once you get a Crohn’s diagnosis. If not from the disease itself then from the treatments.