Share your stories with Mission:Cure!

[Hannah_MC]

Hi everyone! My name is Hannah and I’m a communications associate at Mission:Cure. We’re working on an op-ed about medical gaslighting by healthcare providers and its potentially dangerous ramifications. We were wondering if anybody in this group has experiences they’d like to share? Were your symptoms discounted? We want to highlight a different approach- outcome based incentives to cure chronic diseases. Let us know!

[Smiley316]

I had nausea on and off for 3 yrs, no pain ever just nausea I told Dr they did not think anything of it they said maybe it was meds for osteoporosis that I was taking that make me feel that way, then 10 months ago I had more severe nausea and some pain they finally took me seriously ,and it was confirmed I had chronic pancreatitis, I wonder if it were investigated 3 yrs ago I probably wouldn't of had chronic pancreatitis and it could of been reversed.

[33mark]

During a flare up I went to the emergency room telling them I have pancreatitis and I know what is happening. My heart beat was in the lower 40’s and my speech was slurred. They said I was having a stroke and my pain was a side effect of the stroke. They gave me fentanyl and fluids. The next morning they decided I didn’t have a stroke and I could go home. As I was packing up to leave my wife; out of curiosity asked the nurse my lipase level. She didn’t know so she looked. It was 1420. She talked to the doctor about it and he said it was nothing to worry about. It was from my “stroke “ event.

[Gatorgirl8]

I have had issues with my stomach for 12 years at least. I’ve been all kinds of gastroenterologist and none of them could tell me what was wrong. I finally found this one Gastro Doctor Who did a endoscopy and determined I have EPI. They started me on Creon. But gave. Not long after I started on it, I was extremely sick and lost 20 pounds in one month. I went to the emergency room and I had to have emergency surgery for intestinal blockage. My adhesions from previous surgeries had strangled my small intestine. Now, because my stomach is so bloated still I’m worried it’s happening again and I can’t get a doctor to look at it for me. I feel doctors discount women’s information. Thank you.

[Charlie_P]

Hi Hannah! It took doctors 8 months to diagnose me with gallstones when I indicated that there were gallbladder problems in my family and also asked if my gallbladder should be looked at properly since my Shiatsu masseuse had indicated that something is wrong with my gallbladder to which my gastroenterologist replied that the masseuse is not a physician and does not know what he is talking about (this was back in September 2024).

Now just last week, following an EUS indicated that I have gallstones!

To give you the full picture I was diagnosed with EPI in July 2024 after a pancreatic elastase test indicated that my elastase had gone down to 145. Prior to that I kept on getting very sick on my travels so I was looked at by the infections disease unit and given loads of antibiotics. I eventually refused taking more antibiotics as the effect in my stomach were really bad.

My pancreatic elastase was down to 129 in September and I just retested last week and am awaiting a result. I have been taking Creon tablets since the end of September.

I kept on insisting with my doctor for a referral abroad since my diagnosis was that I have EPI with no underlying cause. Turns out I also had gallstones which did not appear in any CT scan, ultrasound l, MRI or HIDA scan. Indeed the HIDA scan (carried out in November 2024) indicated that the function of my gallbladder function was fine. It was only an EUS that showed this ( this was carried out on the suggestion of doctors abroad after my doctor consulted with them upon my insistence).

I also never had pancreatitis, pancreatic cancer, CF as well as the other underlying causes for EPI. I have been wildly tested.

So anyways this has been my ongoing saga! No sure if it is a clear case of gaslighting but it was a very unpleasant experience just the same.

[Keeping_It_Real]

Back in Jan 2024, I started having digestive issues, including side and back pain, oily stool with a foul odor, and unintentional weight loss. When I shared this info w/ my GI doctor, he said this is a sign of a metabolic problem and I should see my primary care provider. So, before walking out of the examining room, I asked him to submit a work order to perform a pancreatic elastase fecal test. The test results came back showing I was borderline severe malabsorption. So, instead of him telling the nurse to have me schedule another visit consultation to discuss the next steps to treat (not cure) my pancreatitis, he just prescribed some Zenpep with instructions on how and when to take them. To make a long story short, last year it took 4 GI doctors to determine I had acute pancreatitis!

[Quail99]

My medical gas lighting happened many years ago before I was officially diagnosed with autoimmune disease. It was over 15 years ago and before I had any EPI problems. It was a horrendous time in my life when doctors either threw their hands up in the air or told me to seek psychiatric help. I did seek psychiatric help only to be told it was truly physical. I hope what you're working on helps change the medical community's mental treatment and emotional treatment of their patients. I was very close to taking my own life after years of pain and lack of sleep. I am fortunate enough to have found a health care provider that was able to identify my problems and guide me on a path towards health. There have been bumps in the road but I am able to handle them now. Thanks.