Some random rambles about IBD, mental health, & disability justice incoming

I am participating in a study through my hospital where I met with a nutritionist and am currently meeting with a mindfulness coach; they're looking into whether these things help with IBD symptoms.

I have gone into this with an open mind but I'm not really vibing with it. For...complicated reasons.

OK, so the theory here is basically that stress makes IBD worse. Which...is true! Maybe not for everyone, but for a lot of people. Stress probably doesn't *cause* IBD but it can trigger flares or worsen symptoms. It certainly has for me, in the past.

But in the first session, the mindfulness coach did something I hated, which is that she compared an IBD patient who doesn't learn to manage stress appropriately to someone who gets open heart surgery and then goes home and eats a bunch of cheeseburgers.

So....whew. There's a lot to unpack here.

The first thing I want to point out is that IBD hits most people young. 15-30. I was 14. A child.

Yes, I was bad at managing stress when I was 14. Shocking!

I have always resented the thought that I should have somehow learned to become some kind of zen master with total control over my emotions during the same year that I got my first period lmfao

and that because I did not manage to do that, everything that happened from there, all the pain and suffering and irreversible damage to my body is.....my fault??

It's enough to get anyone's hackles up.

But, OK. I still went into this with the open mind. I can't change the past, but maybe I can learn some things to make my future healthier.

I'm still not vibing with this though...

The whole idea of this program seems to be stoicism, basically. This idea that even if things are bad, that doesn't mean our mood has to be bad if we have the right tools to cope.

I found stoicism appealing at one point in my life.

During my sickest years when I had little hope that my life was ever going to be okay? I loved the idea that maybe I could disconnect my emotions from my circumstances, that I could be okay emotionally even if I was always going to be sick physically.

Now it....feels like a tool of oppression?

Like, let's think a minute about all the shit we burden IBD patients with.

We have to take medications that cost $5000 a month.

We have to never have a lapse in our insurance so that we don't end up being on the hook for that $5000.

That means we either need to hold down a job, even (ESPECIALLY!) during our sickest times, or else we need to traverse a confusing, expensive, and often adversarial process for getting insurance on the individual market or through the government.

Even once we have insurance, we have to jump through hoops to get prior authorizations, fight with specialty pharmacies, etc.

Then we can NEVER EVER miss doses of our $5000 medications, lest we develop antibodies.

We have to deal with doctors & other medical staff who are often dickheads, and god help us if we don't like our doctor and want a new one because transferring our medical records from one hospital to another is a 2 month long arduous process.

All of this & more, and all on top of the stress and trauma of being sick, in pain, and the straight up body horror that some of our symptoms or treatments cause.

And we're supposed to not be stressed? We're supposed to just learn how to cope with all of that without experiencing feelings of stress. Because otherwise, it'll be ALL YOUR FAULT when you get sick!

I reject the premise. The problem isn't me. The problem isn't that I react with feelings of stress to situations that are objectively stressful.

If stress is making people sick then we should be tearing down the system that is causing all this stress

instead of placing the burden on individual patients to learn to become zen masters.

Like today we literally talked about the health benefits of a positive mindset, optimism, not focusing on the negatives, etc.

And I cannot help but feel that I'm being encouraged to, for the sake of my own health, basically ignore the injustices of the world, learn to just cope with them, because anger is unhealthy.

No. Anger is productive. The situation warrants anger. Nothing changes without anger.

This approach also fails to acknowledge the natural effect that years upon years of suffering has on a person's brain.

I actually WAS optimistic back when all this started!

When I was 15 I used to say shit like "I'm glad I got sick because I learned so much."

I had a loving family & every advantage in the world. But then when I was 16 I got my first kidney stones. And when I was 17 I didn't get to eat food for 2 months and then I almost died. And then when I was 19 I had to drop out of college and have a bunch of surgeries.

And then when I was 20 I had one of the worst possible complications from my surgery. And I was in the worst pain of my life and I was alone in the ER whimpering and some doctor stuck his head in and told me to quiet down.

And so on.

Somewhere along the way I lost that sunny outlook on life. It beats you down.

And then when I was 28 a mindfulness coach told me that because I haven't yet learned how to stop experiencing the emotion of stress, this is all my fault.

The problem isn't me for being a human with human emotions. Send tweets.