When I first received the diagnosis, I felt completely overwhelmed by the amount of information being presented to me by multiple specialists. I wasn't sure who I should be listening to, or whether their recommendations were aligned.

My primary care physician mentioned a clinical trial, but I didn't fully understand what participation would entail in terms of my daily routine and the monitoring requirements. The consent form was eighteen pages long — I signed it, but honestly, I couldn't tell you what I agreed to.

What helped me most, eventually, was talking to other patients who had been through similar experiences. That peer support was something the clinical system just didn't offer naturally. You had to find it yourself through online groups and local meetups.

My family played a central role in every major decision, but there were moments when I felt like the professionals weren't addressing them directly — as if the disease belonged only to me, and not to our whole household dynamic.

The follow-up appointments were poorly spaced. There were weeks where I had no contact with the medical team, and I was left to interpret my own symptoms without any structured guidance from the care team.