Before diagnosis, the decades in the wilderness where I did not even have the words or constructs to understand my pain and exhaustion, never mind anything to understand them, it was terribly, terribly lonely and very, very frightening. I stumbled around in the dark and had absolutely no idea where I was either going to or coming from. I am sure I did the old proverbial “walk around in circles” thing on many occasions without even knowing it.
Then came diagnosis. As I look back on the two years since then, the journey has been just as wild. But it has been very different too. Diagnosis may be the end of one journey, but it is also the beginning of a new one. A way less lonely journey. Before diagnosis, there was just me. I had no tribe, and I belonged nowhere. Post-diagnosis, I have become a vital member of not only a tribe but an army. I am a Zebra, I belong to The Mighty, I am a team member of many groups and I feel as though I contribute and make a difference in some small way. I have all the benefits of belonging to a tribe, and I no longer walk alone in this part of my life.
But that diagnosis keeps threatening to change. As each new specialist throws in their opinion (whether asked for or not), as criteria for diagnosis evolves and tightens, and as new discoveries are made, especially in genetics and science labs, the fear of being kicked out of my tribe is great. What would happen if I was told I no longer belong? What if was sent out into the wilderness again?
There are massive potential problems and complications for medical insurance and doctor options when losing the diagnosis, but in many ways, the scariest part…