Recently I met Cheryl, a member of my adopted community here in the Middle of Nowhere, Cannabis Central, USA. Cheryl is a bit older than I am, used to be a writer of religious texts. Even had one published before self-publishing was a thing. A bona fide published writer. Writers are a weird bunch (obviously) and Cheryl is certainly weird, and was probably a bit (way) off even before she got sick — like me, Cheryl is seriously chronically ill. I haven’t asked about her diagnoses but like many chronically ill people and especially chronically ill women, she likely has more than one illness, and it is likely that at least one of her afflictions is an autoimmune disease. As I am learning, these illnesses, for whatever reason, tend to travel in packs. I personally only have one that I know of — Crohn’s disease — but since moving residences 2 weeks ago and finding myself unable to get out of bed much and wracked with head-to-toe pain and crippling fatigue ever since, I am once again wondering if I have another one although I have learned through reading other Crohn’s patients’ testimonies online that Crohn’s all by itself is enough to render anyone the barely-walking dead and that is indeed how I feel. Cheryl, on the other hand, has been buried under her particular prison for years.
I’ve been thinking a lot about trauma lately as I contemplate my increasingly vulnerable and terrifying station as a chronically ill woman who will have to rely on the long-term care and concern of others if I am to survive. For some reason I found this topic exceptionally difficult to write about in a coherent and meaningful way and in my experience as a somewhat seasoned social critic, that usually indicates that there is some thought-termination around the issue and that I am working my way through something that is not meant to be dissected and understood and that is probably the case here. For whatever reason, this post seems like it just does not want to be written, and as a writer and a creative person I can and do respect that, so I am giving up on the idea of writing a proper post about it. I have scrapped a dozen versions of this post and I’m glad they are gone.
But there is something that I — not my muse — would like to say about trauma, about women’s experience with trauma, how it affects us, and what little can probably be done about it. But little is not nothing, and where there is anything women can do to avoid trauma and to avoid becoming traumatized, women seriously need to do everything in their power to avoid it. The effects of trauma on our long-term physical and mental well-being are just too serious to ignore and we cannot keep letting this happen to us; we are told that “what does not kill us makes us stronger” but this is a reversal, and a lie. And besides, there are probably worse things than death and it seems to me like trauma may be one of those things. In reality, the constant traumas women experience that stop short of killing us only make us weaker, sicker, and less able to function. For women, the effect of constant trauma is that we are neither here nor there — we end up the walking dead.
Just wear a diaper. This was the response of my now ex-boyfriend when I told him how sick I was due to my Crohn’s disease, that I was unable to travel, and that if I was ever going to leave this cannabis legal state for another more affordable one I would need help with literally everything that entailed, up to and including supporting me with physical caretaking for the duration of the trip and likely continuing once I got there. Before I started to feel significantly better, about a year and a half after beginning treatment with medical cannabis, I was extremely, extremely ill, more ill than I had ever been in my life, sicker than I ever thought possible, and so sick I actually thought I would die. I hadn’t slept well if at all in literally years by then, I had been unable to eat or digest food without extreme physical distress for the same amount of time, and had lost significant weight. But more importantly than weight, sleep or nutrition, every last drop of my former vitality was gone and no matter what I did or didn’t do, including 2 full years of compliance, dutifully taking Western medical treatments that were actually making me worse, nothing helped to quash the hellish, unrelenting pain and symptoms of my serious chronic illness. I was absolutely circling the drain.
Before this happened to me I had no idea it was even possible to be that sick. How sick was I? Well, I was so sick that eating food put me in severe distress, so much that not eating at all was preferable, even if I didn’t eat for days, and even if the reason I didn’t eat for days was because I had the flu. Having the flu and not being able to eat for days actually made me feel better than I usually felt because all food made me extremely, extremely ill including severe unrelenting bloating, nausea, fevers, full body and joint pain, crippling abdominal pain, gut spasms, urgency and diarrhea. I felt better with a full-blown flu than I did on a normal Crohn’s day.
Remember last time you had the flu? Try. Try to remember how badly it sucked and how long it lasted, how your whole body hurt inside and out, how you were cognitively slowed if not downright impaired, how you had a massive fever and a crippling headache, how difficult if not impossible it was to do everyday tasks like driving, conducting telephone or in-person business like making and getting to an appointment or getting prescriptions filled, how hard it was to work a full day (or how hard it was to even move) how you lost your appetite completely, how you shit and/or puked your guts out if you even tried to eat or drink. As an un- and undertreated Crohn’s patient, having the flu and all it entails was actually bliss for me and better than I could ever hope for on a normal day because I couldn’t eat, and where food made me extremely, extremely ill. In fact, if I hadn’t come down with the second-worst flu of my life 2 days before I was scheduled to travel across the country to legally treat my Crohn’s disease with medical cannabis, I may not have been able to make the trip at all. That is how unbelievably sick I have been as a Crohn’s patient, but I have found that it was and is impossible to get anyone to understand it if they have not experienced it themselves, and that generally-well people just do not get what being seriously or chronically ill is really like and apparently it’s impossible to explain it to them.
So why is “just wear a diaper” not good advice to someone who is chronically, incurably and progressively ill, basically incontinent and unable to predict when, where, how frequently etc. they will have to “use the toilet” whether or not there is actually a toilet around? Because diapers aren’t meant for sick people, that’s why, and diapers do not make someone who is extremely ill well again. They just don’t and they just can’t. Believe it or don’t, there are limits to what diapers are able to do, you see, and it has everything to do with what diapers were (and were not) designed to do in the first place.
Babies shitting into diapers aren’t sick, elderly people doing the same thing aren’t sick. Get it? They do not have crippling pain that accompanies their often unpredictable need to shit, they do not have to puke at the same time they are shitting, they do not have to figure out how to lay down and shit at the same time — or do all of this while puking — because they are too ill to sit up and shit or to sit up to shit-while-puking. If you do not have Crohn’s disease yourself, it is likely that you have never considered that it was even possible to be this sick just like I didn’t know until it happened to me. But hearing this kind of fuckwittery — like “just wear a diaper!” — from people who are supposed to care about you is not helpful. Please read on if you do not wish to seriously hurt someone you are supposed to care about but who has, unfortunately, fallen seriously chronically ill.
You are totally wrong about Crohn’s survivors. The real survivors have real families and real jobs and real lives. You need to up your game.
This was my mother’s response — remember her? She’s a nurse. She was responding to me telling her — a nurse — that Crohn’s disease is incurable and progressive, and that if she thought that my treatment with medical cannabis was a failure because I wasn’t cured, she wasn’t thinking things through. A nurse, a fucking nurse, not only has no idea that an incurable and progressive disease is both incurable and progressive, she disbelieves me when I tell her, and she has obviously never even bothered looking it up. Here is the first result when you ask Google “Is Crohn’s disease progressive?”
Stages of Crohn’s Disease
Crohn’s disease is marked by inflammation of the gastrointestinal (GI) tract. The inflammation can appear anywhere in the GI tract from the mouth to the anus. People with the disease often experience ups and downs in symptoms. They may even experience periods of remission. However, Crohn’s is a progressive disease that starts with mild symptoms and gradually gets worse. The stages of Crohn’s range from mild to moderate to severe. The earlier you treat and manage Crohn’s, the more likely you’ll reduce your risk for developing severe symptoms.
That was from Healthline but it’s also on other sites as well, like this offering from a peer-reviewed medical journal:
Crohn’s disease (CD) is a progressive disease that is subdivided into three phenotypes: inflammatory, stricturing and penetrating. At diagnosis, most CD patients have inflammatory disease. However, the natural history of CD is one of progression over time to structural complications of the gastrointestinal tract (strictures and fistulae) requiring hospitalizations and surgeries.
And this from the Crohn’s and Colitis Foundation, a well-known Crohn’s and colitis charity (whatever the hell “charity” means in that context. They fund medical research) when asked whether Crohn’s is incurable:
Known collectively as inflammatory bowel diseases (IBD), Crohn’s disease and ulcerative colitis affect more than 1.6 million Americans. That’s one in every 200 Americans living with one of these debilitating, medically incurable diseases that attack the digestive system.
After reading your email, I just don’t see how your “treatment” has led you any where but down and out. Your list of food and supplements are far more expensive than any working person can buy on a daily basis.
You haven’t seen a “traditional” doctor for 3 yrs or more. And I’m not a supporter of anyone using weed as a treatment. It will NOT help anyone seeking a cure, it may dull the pain…..but I’m not sure on that one either. In the end you are still sick.
Now you need to do the work to get you back into the normal medical system and work with in that system for your future well fare. Your way has not come to a workable end for you. It has depleted and used up all of your time, talents and income. It’s taken you 3 years for it to come to this, now change course and bring yourself back to the surface.
My sister recently suggested that I send out an email blast to my mom’s side of the family to tell them what’s going on and to ask for help. Since I have started flaring the last month or so, probably due to my increasingly poor diet and the stress of my situation and looming homelessness due to having expended all my personal resources on out-of-state lodging and treatment with medical cannabis, she thought I needed to ask for help buying supplements to boost my health and recover my energy and temporary assistance with living expenses. From there, I don’t know what she had in mind except that without health and energy, there is no way I would be able to do anything and I very shortly will need to make a change as I will be unable to continue paying rent in a cannabis legal state.
For 2 days I received no replies whatsoever to my correspondence. Today, this came. This is from my mom’s sister, who is usually the spokesperson of the family so I assume this is their collective response. I have not responded yet, and I may never, because what is there to say? Let’s take it bit by bit.
It’s been awhile since I ate a fast food hamburger, but as I recall, it was even flatter, (somehow) both wetter and drier, and even more repulsively englobulated than the one on the right. Englobulated, it’s a real word because I say it is! Because everything anyone ever says about anything has to be true and people (and multi-billion dollar for-profit corporations) never make shit up to create a mental picture or steer the conversation and they definitely never lie.
Thank you RA Warrior for addressing the vast discrepancy between depictions of patient suffering in Big Pharma advertisements and what actual real patients actually experience in real life with their diseases and when taking Big Pharma drugs to treat our serious chronic illnesses. RA Warrior blogs about rheumatoid arthritis which is an autoimmune disease like Crohn’s is: both are systemic autoimmune diseases that cause body-wide inflammation and symptoms including organ and eye damage, and RA causes particularly notable joint damage while Crohn’s causes particularly notable gastrointestinal damage. Notice I said damage, not just “symptoms.”
While RA sufferers are progressively crippled from damage to and deterioration of the large and small joints in the body, and have other systemic issues as well like organ and eye damage and just feeling like crap all the time from head to toe, because systemic, Crohn’s patients are progressively crippled from damage to the GI tract including ulcers and erosions, fistulas, adhesions, perforations, and partial and total obstructions and have systemic effects on organs and eyes and feel like crap everywhere all the time too. Yay! And while most patients eventually figure out from painful, exhausting and crazy-making experience that the most prevalent (or only) cultural conversation about their disease isn’t true, most healthy people seem to have no idea and never learn what these diseases are really like, how much havoc they wreak on the body as a whole including organs and joints, and that they are both incurable and progressive. That means that chronic, incurable and progressive diseases like RA and Crohn’s never get better and they only get worse despite the fantasy of effortless healing and full, glorious recovery being pushed by the global Big Pharma propaganda campaign hawking expensive and gravely dangerous poisons to unsuspecting and desperate patients and their families.
As I have mentioned here before, Crohn’s patients talk openly amongst themselves about the hideous realities of Crohn’s disease but these things are mostly not shared outside Crohn’s communities. Please watch this video in which a Crohn’s sufferer sums up the heinous reality of living with Crohn’s including extremely prevalent “suicidal ideation” which is completely and utterly taboo in some cultures including American culture for whatever reason. Listen to the medical and bodily horrors this woman has experienced, the shared horrors many Crohn’s patients suffer or at least can relate to, and assuming they have been blessed with the gift of imagination can probably imagine they themselves may have to face in the future as a result of their shared incurable, largely untreatable, progressive disease. The Crohn’s experience is literally a bloody horror show nearly beggaring belief — can you blame them for only wanting to tell the truth to other people who are going through the same things? This woman has a severe manifestation of Crohn’s called Fistulizing Crohn’s and after struggling and resisting for years recently submitted to an ostomy surgery and will have an ostomy bag for the rest of her life.