Has anyone else dealt with delayed diagnosis, missing records, or doctors refusing to discuss your care?
Hey everyone. I’m a 34-year-old woman dealing with chronic illness and autoimmune issues, and I’m trying to understand whether anyone else has been through anything similar.
Whenever I go to a doctor’s appointment, nothing about my actual health, treatment options, or plan of care gets discussed. I bring up severe symptoms and they order no tests, offer no explanations, and just say “Okay, we’ll follow up in four weeks.” It feels mechanical and dismissive.
My MyChart also doesn’t show my full medical record. Clinician notes are missing, certain blood biomarkers don’t appear, and when I requested my full designated record set, I wasn’t given everything. Imaging and diagnostic studies that showed systemic abnormalities were only handed to me in a heavily sanitized PDF. These findings are not visible in my patient portal, and none of the conditions are listed anywhere.
Some of the language in the internal notes I did receive is stigmatizing and dismissive. When I requested a computer-readable export of my health data, I found additional internal tags like “research studies,” “observational studies,” “deviation of plan,” “sensitive only,” and “donotsend.” What really confused me is that the export also contained data fields about tumor staging, organ involvement, and something labeled as a predictive AI template—none of which has ever been discussed with me by a clinician.
My symptoms have been repeating since 2008 and getting progressively worse. I’m experiencing muscle weakness in my arms and legs to the point where walking is difficult. I used to be an active, accomplished musician, and I feel like I’m losing my life without any clarity, support, or transparency from the people who are supposed to help me.
I’ve reached out to law firms, civil rights offices, and patient relations, but I’ve been stonewalled or told they don’t address these issues.
Has anyone else ever experienced anything like this? If so, how did you get answers or advocate effectively when no one seemed willing to tell you the truth? Any advice would mean a lot because I don’t really have a circle of support with people who understand issues relating to chronic fatigue etc.