How rare is this insurance situation?

I just spent the day on the phone with both of my insurances specifically and my state's Medicaid on its own. This isn't the first time and I'm sure it won't be the last, but the older I get the more the representatives on the other line seem to be confused or not sure exactly how to answer my questions/proceed. Some receptionists at the doctor's office don't even understand HOW I've managed this.

I was diagnosed with Crohn's when I was 17. My father had BlueCross BlueShield through his employer and due to the timing I was able to keep this until age 26 - in theory. Somehow this insurance was forced to keep me on due to having a pre-existing condition (aka diagnosis before 18). They fought really hard to drop me when I turned 26 but this stipulation forced them to keep me on. I don't really know the details.

I began taking Remicade every 8 weeks from age 17 and I'm still on it at age 35. I still have my parents' insurance, which supposedly covers 80% of the bill and am enrolled with Medicaid as a secondary insurance to cover the rest. My father died a couple of years ago and I was able to keep BlueCross because my mother took over as the policy holder.

She has now aged out and moved on to Aetna with Medicare but continues to be the policy holder for my own sake. Marriage for me has been up in the air for this exact reason. I've been in a relationship for 20+ years and I know a lot of things will be changing once we tie the knot.

I'm not really sure the point of this post. I just feel really isolated in this situation and wanted to know if anyone has experienced the same? Or maybe parents out there with diagnosed children have found themselves in the same situation? Hell, even if our billing situations don't align, I'd love to hear how you handle it.