What is are some things about pancreatitis that you wish people would understand?

[Sofia_MC]

Pancreatitis is a complex disease. What's one thing, or what are some things, you wish people without pancreatitis would understand?

[Adlon57]

I have epilepsy and pancreatitis both get bad press, epilepsy they think you are stupid almost sub normal, pancreatitis they think you have been a drinker and not saving. BOTH WRONG! Epilepsy I have a high IQ, some of my best and most down to earth friends have epilepsy, and I have had the condition over 50 years. Pancreatitis like epilepsy is not fully understood, certainly when I was diagnosed in 2018 I had not drunk alcohol in four years previously, {the popular cause!} [they could not understand then?] my full cause is still being diagnosed now? Ironically having my liver examined tomorrow afternoon!🤔

[HodorO-H]

Chronic pancreatitis is different to acute pancreatitis and has a range of causes, from genetic to autoimmune to idiopathic. It should not be assumed to be a consequence of alcohol abuse!

[Susaberry in reply to HodorO-H]

Yes!

[madonbrew Pioneer]

The exhaustion that goes with it!

[Hidden]

That's a great question Sofia_MC. I wish people would realise that us folk who have chronic pancreatitis often don't actually look ill. It makes me feel like they think I'm pretending to feel awful and my pain isn't as severe as I say it is.

[Susaberry]

I wish people would understand how serious pancreatitis is, how much pain patients experience, how exhausted we feel at times, how restricted our diets are…etc I became so tired of explaining the disease, now tell them that bottom line, my pancreas is eating itself. It usually shuts them up.

[longingtrustingHIM in reply to Susaberry]

I’ve been there. Done that. It is frustrating, when even those in the medical profession look askance or their silence says it all. Or sometimes their skepticism is shown when they kindly suggest a “second opinion”. 😉 Since symptoms are chronic and there can be days when we are “normal” (while sticking to our restricted diets, and taking all the enzymes and supplements) so they assume, as you said, that I must be fine now. And likely it was just “stress”. 😒

Hang in there. We can just keep on keeping on. Managing our symptoms and living our lives as cheerfully and positively as possible. 😊

[Signingfun]

What I wish people would know is that not everything can be cured with a pill. That this disease will not go away in a few days. And I did nothing to deserve this illness

[RobinAnn]

The "just one beer" is not OK. That I'm not on a diet, I'm not eating that bowl of chili with sour cream because that would land me in bed for days, maybe even the hospital.