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.
Continue reading “How Sick is Sick? Why “Just Wear a Diaper” is Not Good Advice.”