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.
Incurable and progressive. So not only is she, meaning my mother, who is a nurse, completely ignorant, she is also completely lazy, doesn’t listen, and thinks she knows what she is talking about when she has not a single clue. Honestly it sounds like she’s been watching too much TV, specifically Big Pharma drug commercials which show serious incurable, progressive autoimmune diseases being easily and completely cured but which programming is meant to sell a product and which therefore necessarily lies. And it is truly frightening when an ignorant person has no idea that they are ignorant. I think I was just mansplained in fact. But let’s look at her language itself which is speaking to me as it were. “Crohn’s survivors.” Crohn’s survivors. Crohn’s survivors. Nope, it makes no difference how you say it, this is just a weird term and an even weirder idea.
First of all, people really only say “survivors” when they mean “victims” but they wish to erase the agent of harm. We see this frequently with the use of it in the context of rape and sexual assault, where it has become fashionable to refer to victims as “survivors” because allegedly it validates the victim’s experience and celebrates the fact that she was “strong” as if all women and as if all victims aren’t strong, even the ones that do not survive. But in the spaces even interested in validating the experience of rape victims, they cannot risk offending men or even rapists for a myriad of reasons (mostly financial and physical) so they speak and act as if no one did the raping. I am speaking here only of the use of the language to describe these things, I am not necessarily comparing the experience of the raped and the chronically ill (although these experiences and these groups do seem to overlap).
In this case, my mom, who is a nurse, in her own mind has completely erased the agent of harm — according to Western medicine and its understanding of Crohn’s disease, she is talking about me and my own immune system, and she is erasing my own immune system as the agent of harm. She is saying that it is possible to separate my immune system from “me” as we wish to separate the patient from the pathogen, or the diseased limb from the healthy stump and using this logic believes I can escape my own body and be “cured” of an incurable disease. By using “survivor” in the context of Crohn’s she is also implying that the harm is in the past and only in the past but when is that true with trauma and when is that true for the ongoing systemic effects of an incurable, progressive autoimmune disease? These words are loaded for bear.
It is truly demented hearing Crohn’s disease framed this way by a healthcare professional, and it is truly frightening for me to hear these insane words come out of my mother’s mouth when I have asked for her help which necessarily requires some level of her understanding. Doesn’t it? In general, how can anyone offer realistic and helpful “help” when they do not understand the condition they are trying to improve? And who would expect it? Not me — I’m trying to explain it to her but she “disagrees” with me based on nothing. Again, I am only harping on this issue not to shit talk my mother but because she is a nurse and more importantly, because she thinks of herself as a healthcare expert and does in fact have a role in other people’s sicknesses and in their healing and not healing as it were. People like her — and her — are the ones taking care of sick people and interacting with them and influencing their care including making observations and decisions about things like attitude and malingering and catastrophization. And this is their level of understanding and inquiry into human health (or does she reserve her absolute worst for me? It’s a question worth asking but still. The implications of this are disturbing for everyone, not just for me).
The rest of her response seems to indicate that the subject has now changed from my disease and how I’m actually feeling and what I’m actually able to do — to discussing my life-long lack of real estate, the state of my career which was largely a bust even before I got sick, and my “failure” to ever marry and have children although I hate children and never wanted to get married in the first place. I don’t have a lot to say about that except to mentally shake my damn head (SMDH) but this is what we are talking about isn’t it? Underneath every discussion anyone has with me about being struck down in my prime by an incurable, progressive disease and “losing it all” in search of healing and relief, the real issue for them is why and how did I allow this to this affect my life.
But how could it not? And importantly to this discussion which was allegedly about the the costs versus benefit of my treatment with medical cannabis, my life would’ve been affected whether I sought out medical cannabis or not. I was significantly ill by the time I abandoned Western medicine because it wasn’t working and I was getting progressively worse. And the “life” they are thinking I should have now as a chronically ill person, which apparently includes real estate, an exciting and profitable career, and marriage and kids, never even existed at all. I mean it’s just so obvious that this discussion — and every image and idea she has in her head, and everything she thinks and says about my situation as a seriously chronically ill person — has nothing whatsoever to do with me. Me, meaning, the patient, the sick person, the one who will now rely on the long-term care and concern — and understanding — of others if I am to survive.