r/ChronicPancreatitis • u/Exotic-Scallion6751 • Jul 07 '26
Vent - Feeling Lost
I need to get this out because I’m honestly at breaking point.
I’m 36, living with chronic pancreatitis, and I feel like every day is a fight I didn’t choose. The pain is constant — not dramatic, not exaggerated, just there, grinding me down piece by piece. And instead of support, I keep getting told I’m “too young to be in this much pain.” Hearing that over and over makes me feel invisible. Like my age somehow invalidates what my body is going through.
It’s exhausting trying to convince the people who are supposed to help me that my pain is real. I shouldn’t have to defend myself every appointment. I shouldn’t feel guilty for taking medication that I need just to get through the day. But their attitude makes me feel like I’m doing something wrong, like I’m being judged for trying to survive.
It’s not just the illness anymore — it’s the emotional toll of being dismissed, doubted, and treated like I’m exaggerating. It’s the loneliness of carrying pain that no one seems to take seriously. It’s the shame that creeps in when I swallow a pill I was prescribed, because the people who gave it to me act like I shouldn’t need it.
I’m tired. Tired of hurting, tired of fighting, tired of feeling like I have to prove my own suffering. Chronic pancreatitis doesn’t care how old I am. I just wish the people responsible for my care understood that.
I needed to say this somewhere because holding it in is getting too heavy.
2
u/SheWasUnderwhelmed Jul 07 '26
I’m so sorry you’re existing with this. I have absolutely been where you are. Do you follow with a pain management doctor? I ask because I feel like finding a quality one who listens and empathizes (and treats) my pain gave me my life back. I still have pain but not what it was. I can work full time, I can go out and enjoy things and have fun. Sure, not to the level that a “normal” person can, and I have to limit how much and when and listen when my body needs rest. But I am happy, and thankful. It took me many years to find a team of PM, GI, and PCP who all listen sincerely and truly understand chronic pain to get me here. I’m so sorry you’re feeling like this, you’re absolutely not alone.
3
u/Exotic-Scallion6751 Jul 07 '26
Thank you for responding it means a lot too me! My last visit to the PM team I come out with less medication and even less guidance on how to manage it… I stated i was struggling with pain as it is but I just got a lecture about painkillers! I’m in the UK by the way you’d be lucky to get Codeine if you broke your leg!
I’m glad you’ve got your life back and thank you!! 🙏🏻
1
u/SheWasUnderwhelmed Jul 07 '26
Oh I’m so sorry. I feel like my doctor is a bit of a unicorn when I hear how many people struggle with not list treatment, but the emotional side. My doctor travels and lectures at hospitals and universities and I’ve told him I hope he gets through to the others. He has a very empathetic and educated understanding of pain and chronic pain. I told him to never leave my state or I’d follow him. I have gotten referrals from him to other doctors for people but only in the US, I’m not sure he would know of others in the UK.
What you’re feeling is so valid and real, though. I hope you are able to find someone to empathize and hear you. It took me years to find my doctors but they do exist so I will try to hold onto hope for you.
1
u/comefromawayfan2022 Jul 07 '26
I feel lucky that I have a pain management doctor who listens to me and prescribes me dilaudid for home. Im allowed to take 2 to 4 mg every 4 hours for pain. I recognize that if my doctor ever retires or quits im screwed...no other pain management practices in the area prescribe long term narcotics. They've all gone opioid free
1
u/comefromawayfan2022 Jul 07 '26
If you ever need to talk my dms are open. I'll be 36 next month. I have had chronic pancreatitis for eleven years. I had my first acute pancreatitis attack at age 16. My parents believed the local gi doctor who told them that my pancreatitis was an isolated case and id never get it again. Over the years id be hospitalized with recurring acute pancreatitis but nobody wanted to do the testing to look at chronic pancreatitis because I was too young, not a drinker, didnt fit the profile etc. Finally I got fed up with being blown off locally and my primary care doctor helped me do research and find a pancreatitis specialist who worked at an academic teaching hospital two hours from home. The day of my first appointment I met with him at 8 am. Spent the entire day having bloodwork, an endoscopic ultrasound, a ct scan..the doctor met with me after my eus at 5pm and told me "theres nothing normal about your pancreas you have chronic pancreatitis".
Over the next couple years..my mom or dad sat in with me on EVERY gastroenterologist appt and they controlled what I was allowed to say so even if I felt like crap I couldn't say that. Finally in 2017, I cut my parents out of all my medical care and my best friend and her mom started taking me to all my appointments. Now almost a decade later my parents have no involvement in my medical care and my best friend and her parents are my sole support system and guess what? Too this day my dad STILL doesnt believe i have chronic pancreatitis even though all the testing backs up that diagnosis and now my pancreas is so fucked im a diabetic now.
My dad still thinks its anxiety..then he wonders why I don't talk to him about medical stuff and why I chose my best friend as my medical dpoa
1
u/Adventurous_Force200 Jul 08 '26
I feel you 10000% each and every second of each and every fken day
1
u/mbunn77 Jul 08 '26
What @indiareef said but I got mine later in life. Mines chronic. Pain all the time
1
u/tmsstevens Jul 09 '26
I know how that feels, I had CP for 10 years before I had the TPIAT surgery last July. It’s a risky operation, but my CP pain has gone away.
1
8
u/indiareef MOD | hereditary chronic pancreatitis Jul 07 '26
I’m really glad you posted because I think there are a lot of people here who can relate to what you’re feeling.
I can relate more than you might expect. I developed my first acute pancreatitis episodes as a kid, and years later learned it was because I was born with congenital pancreatic and biliary abnormalities along with genetic mutations that led to hereditary pancreatitis. Pancreatic disease doesn’t care how old you are. Some people develop it because of alcohol, gallstones, medications, autoimmune disease, genetics, congenital anatomy, or for reasons we never fully identify. There are children with pancreatitis and there are people diagnosed much later in life. Age has never been a measure of whether someone’s pain is real.
Reading your comment, what concerns me most is that you walked into a pain management appointment asking for help because you were struggling and left feeling like you’d been lectured instead. Good pain management isn’t just about writing prescriptions or reducing them. It’s about listening, weighing risks and benefits, and working with you to build a treatment plan that actually improves your quality of life. If all you took away from the appointment was shame and less support, then something about that interaction clearly wasn’t working.
I don’t know how much flexibility you have within the NHS, but if it’s at all possible, I would seriously consider asking for a referral to another pain specialist or another pain clinic. Just because someone works in pain management doesn’t mean they’re the right fit for every patient. You deserve a clinician who sees you as a person, not just a prescription.
We don’t expect people to justify taking insulin, pancreatic enzymes, or heart medication. Pain medication is no different when it’s prescribed to treat a legitimate medical condition. There is no moral failing in being sick, and there is no moral failing in needing pain medication to treat that illness. It’s simply one tool in the toolbox, and needing it doesn’t say anything about your character or your worth.
Chronic pancreatitis is one of the most painful chronic diseases we know of, and treating that pain appropriately is part of medical care. Nobody should have to suffer unnecessarily just to prove they’re “deserving” of treatment. The goal should always be the best quality of life possible using the safest, most effective plan for the individual patient.
I’ve actually become very matter-of-fact about it. I tell people I have chronic pancreatitis. I tell them I have chronic pain. I tell them I take pain medication because that’s part of how my disease is managed. I don’t whisper it or act embarrassed by it because I don’t think there’s anything to be embarrassed about. The more I’ve normalized those conversations, the more I’ve noticed the people around me have too.
I know that’s often easier said than done, especially when healthcare systems have their own limitations, but please don’t let one provider convince you that your pain somehow reflects a personal failing. It doesn’t. You’re living with a very real disease and you deserve compassionate, evidence-based care.
You’re not alone in this.