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My 15 year old has been suffering with pancreatitis and now chronic pancreatitis for years. She has had a lot of hospitalizations and procedures. None relieving the pain and other symptoms. Some doctors have been great and others cruel. She feels like she is alone in her suffering. Just wanted to see if there were similar stories out there and how you cope.
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Reefsider robin55947
Posted
I was born with a rare and little understood metabolic dysfunction which throws numerous and various symptoms and is still not understood by most medicos.
My teenage years, with little confidence and all the usual insecurities associated with that period was battered often by the ignorance of most of the doctors I encountered. I was very alone because it was pre-internet, I couldn't find peers to talk to which would have helped.
These days there are support groups for teens with chronic illness online, with some meeting in person depending on the area and I'd strongly suggest you look for some that might suit your daughter so she can choose her group, I know it would have helped me.
My chronic pancreatitis is associated, it's thought, with my other disease and given the symptoms I had as a teen I'd swear I had attacks of acute pancreatitis which weren't picked up because of the other disease. The symptoms were mortifying for a teen, I have horrid memories and I feel for your daughter.
I've been diagnosed with Chronic Auto Immune Pancreatitis but think it's really Metabolic Pancreatitis, bottom line is I have Chronic Pancreatitis and the title matters little as treatment is the same for all.
Unfortunately most doctors don't understand pancreatitis, even many gastroenterologists don't unless they specialised in the study of the pancreas. I've suffered abuse from doc's who assumed I was an alcoholic for instance even though I've never touched the stuff. It's dreadful how we're treated at times and when ill especially it can have a devastating impact emotionally. I find it difficult to understand how anyone could be cruel to a sick child.
The impact of illness and bad treatment/attitudes by so called professionals from a young age has impacted on my personality in the sense that I have trust issues. I'd suggest that your daughter also sees a professional who can help her overcome any psychological trauma brought on by both the illness and her treatment. I hope you don't mind my very personal post. Good luck.
robin55947 Reefsider
Posted
heather0315 robin55947
Posted