It’s not the having of the disease.

I’ve mostly made my peace with the fact that my immune system is at war with myself, manifested in the sleeping monster that lies in my gut, and that my life will never be “normal.” The physical stuff, that’s fine. I can deal.

It’s all the stuff surrounding this disease. The culture. The way people talk about it. Even the stupid name is awful.

Unlike “ulcerative colitis,” which basically describes what’s going on, Crohn’s disease is the most undescriptive name ever. Even something like “Hashimoto’s thyroiditis” has a clue in its name. “Hydentritis supportiva” sounds intimidating and mysterious, and “lupus” has such a reputation. Even “Rheumatoid arthritis” sounds more interesting than regular arthritis.

But no. Crohn’s disease is named after the dude who “discovered” it. I thought “Crohn’s colitis” was a weird name for a while, but at least that gives people a fighting chance of guessing what it’s about. The word “disease” is so generic.

Let’s not forget the fact that nobody (including myself half the time) can spell “Crohn’s”. So we get Chrohn’s and Chron’s and maybe sometimes Crone’s.

Another thing I hate about this disease: poop jokes sound so funny when you make them self-deprecatingly about yourself, but so awful and crass and unimaginative when you read them on the internet or in a book. If there’s one upside to this disease, it’s the fact that I can make unlimited poop jokes–and that’s not much of an upside.

(There are other upsides, but they are all indirect.)

Nobody really wants to talk about poop, ever, so I can’t even be completely forthright about what my disease is about. With other problems, you can explain symptoms in full with no social repercussions. Not so much with Crohn’s. Nobody likes to talk about diarrhea. I’m convinced that the thought gives some people cognitive dissonance.

When you have cognitive dissonance, that’s when you get the worst of the platitudes and the pat little answers.

Nobody really knows what’s going on, but everybody’s going to be super nice about it.

That’s where you get this victim-culture surrounding Crohn’s (and likely other diseases as well, although I haven’t researched them). Lots of writing in the style of “woe is me” or–better yet–from a third party, “woe are ye.”

There’s this attitude of “aren’t we courageous for living with this disease” and “here are some ways to make your life suck less but you should just resign yourself now because it’ll be less painful for you.”

The aesthetic is bright white and sterile, just like the doctors office. The empty words of encouragement are sterile, just like the doctor’s office. Everything takes a cue from the modern medical system, which is broken and inefficient and is what got most of us to this spot in the first place.

It’s like Stockholm Syndrome, but in the medical community. People cease to be “a woman who has a disease called Crohn’s” and start to become “a Crohn’s patient.” Whole identities are built around this medical construct. It’s sick.

I reject that. I refuse to let my life and my identity be defined by an illness that I did not choose. I refuse to stay tethered to conventional insurance exorbitant medical bills and drugs that are so expensive they give me anxiety. I refuse to fall into the victim mindset. I refuse to let the medical establishment dictate my future.

That is why I’ve gone off-road with my health, why I went full carnivore, and why I’ve learned a lot about nutrition and inflammation and alternative lifestyles.

The paleo-for-good-health crowd comes at things from a place of relative health, and has very little to offer in terms of support and ideas for those of us who have had to dig ourselves out of very deep holes.

The autoimmune-disease-is-my-homie crowd refuses to look beyond the bounds of peer-reviewed evidence and thus traps itself in its own modern ignorance.

I choose a third path. I would like to help more people find this path. It is very difficult to get to, but once you’re on it the view is spectacular.