Diagnosis: Day 1

Getting this diagnosis is life changing…

Whether the reality sets in right away or takes time to unfold, hearing those words for the first time can feel like stepping into a world you never asked to be part of. Everything suddenly shifts—your routine, your relationships, your hopes, your understanding of your own body.

There’s no single doctor who can tell you exactly what to do. No miracle medication. No one-size-fits-all solution. That truth can feel overwhelming, especially in the beginning. And if you’re feeling afraid, confused, or isolated, please know—you are not alone.

Everyone who has received this diagnosis has gone through that same storm of emotions. And while each journey is different, the early stages often carry the same weight: uncertainty, grief, frustration, and fear.

As Alexander Chriss shared:

“I had been in severe pain for over six months by the time I found my pain doctor. After our second session, he wrote down CRPS on a Post-it note. I really didn’t look it up or put any thought into it because they kept changing my diagnosis. On my fourth visit with my pain doctor, he asked if I knew what CRPS was and I told him no. He told me that it was now time to start learning about it because that’s what I had.”

That moment—when it becomes real—is different for everyone. For some, it’s immediate. For others, it takes weeks or even months to absorb. But no matter when it hits, the truth is the same: this is hard. It’s okay to be unsure of what comes next.

That’s why this space exists. To share the knowledge, the hard-earned lessons, and the lived experiences of others who have been through it. We hope that by opening up about our own journeys, we can help you feel just a little less lost as you begin yours.

You don’t have to do everything today. You don’t have to know all the answers right now. This is just Day One. And that’s more than enough.

We’re here with you—every step of the way!