Rare disease, chronic illness and invisible disability can be difficult to grasp if you've never walked that road. It's not a clear path lined with happy care protocols and treatment regimens. Nope, it's a wild wood filled with uncertainty, false negatives, inaccurate tests and more...And those who journey with me (friends, family, physicians) must learn to be comfortable with the unusual road.
People say all sorts of things when they don't understand the path...I'm sad to say I've heard most of them...but those words don't matter. They don't get it...And I'm working to forgive.
As I move toward healing, all that matters is the quiet, deliberate steps. With amazing specialists, I've come to realize that there are things that are KNOWN about my health/diagnoses and others that require further investigation. So we treat what we know and we keep investigating. No drama...just moving forward.
To those in my tribe lovingly walking with me...I am grateful beyond words. I LOVE you.