r/pancreatitis

I’m usually the person here trying to be realistic without being hopeless. I talk a lot about adapting, advocating for yourself, finding quality of life, and figuring out what makes this disease livable.

Today I don’t particularly feel like doing that.
I’m tired.

My OCD has been rough lately. My pain has been higher than usual despite eating less and less, and honestly I suspect anxiety and stress are contributing more than anything I’m putting in my stomach. I’m fine, technically. Nothing dramatic is happening. I’m managing. But “managing” and “doing well” are not always the same thing.

And maybe some of this is perimenopause. Who the fuck knows.

Women’s health somehow manages to feel even less studied and understood than the pancreas, which is honestly impressive. I was born with hereditary pancreatic booby traps and have spent most of my life dealing with the consequences of a disease that medicine still has enormous gaps in understanding. Now apparently my ovaries may be entering their own little retirement era and there’s another whole collection of symptoms where the answer often seems to be, “Yeah, that happens sometimes.”

There’s something particularly exhausting about living at the intersection of illnesses society has historically been very comfortable dismissing.

Pancreatitis gets written off as a disease of theoretical alcoholics who apparently deserve whatever happens to them. Women getting older is treated like a mildly embarrassing biological inconvenience we’re supposed to quietly deal with. Neither attitude leaves much room for the actual human being stuck living in the body.

And today, I’m just tired of living in the body.

Not in a scary way. Not in a crisis way. Just in the very chronic-illness way of wishing I could clock out of being a patient for about 24 hours.

I don’t want to troubleshoot symptoms. I don’t want to wonder what I ate. I don’t want to calculate whether eating less will help or just make everything else worse. I don’t want to decide whether this pain means something or is just Tuesday. I don’t want another condition to research because apparently having one spectacularly dysfunctional organ wasn’t enough.

Usually I can find the joke. Usually I can find the perspective.

Today, this shit just sucks.

I don’t want to find the silver lining. I am very much just running on spite.

And I think there should be room in patient communities to say that without immediately turning it into inspiration.
Tomorrow I’ll probably be back to being obnoxiously pragmatic about all of this.

Today I’m calling in emotionally unavailable.

• indi •

P.S. This is just a vent. Not advice for anyone else's situation and it doesn't change how I feel about showing up for this community. I'm just having a bad day... 💚

Hi everyone! I'm Olivia from Mission: Cure, a pancreatitis patient advocacy organization. We're working on expanding our education library to include more resources on acute pancreatitis, and we're putting together a session on the topic with a pancreatitis specialist. It's meant for anyone who has had acute pancreatitis, and for their family and caregivers.

We typically hold these events as 1 hour live virtual webinars, with a Q&A at the end. Note: all our webinars are recorded, so everyone can watch them on their own time afterward.

For this topic, we're trying to gauge how many people would be interested in joining live (between symptoms, appointments, work, and time zones, we know live doesn't work for everyone). If most people would rather watch a recorded talk rather than join live, we may change the format.

It's very helpful to hear what works best for the community, so we appreciate you taking the time!

To vote on a format option, reply with a number or leave a comment!

1. Live webinar with a live Q&A
2. Recorded talk with a live Q&A
3. Recorded talk and Q&A, with questions collected ahead of time

If there's a topic you'd like covered, let us know. This will help shape the session. Thank you!