Autonomic Neuropathy

Sorossini

Yesterday, I was diagnosed with autonomic neuropathy. I strongly suspected I had it after I was formally diagnosed with POTS a few weeks ago, but it came as a shock anyways--I've been chasing down every specialist I can find since I was declared to be in remission in July of 2022, insisting that my new symptoms appearing after treatment were not only real, but getting worse. It feels like I've had every blood test, every exam, every scan, but no real answers.

Autonomic neuropathy is kind of a hefty diagnosis. That's a forever thing, at least it is with the current best practices in modern medicine. All they can really do is treat the symptoms. In other words, I'll live with some/many symptoms and flares for the rest of my life. Ouch. It's also an expansive diagnosis, which is oddly satisfying to me. It serves me as an "explanation" for several of the new chronic illness diagnoses made after I finished treatment: POTS, IBS, overactive bladder, fainting episodes, hyperhidrosis, balance problems, etc.

I expected the diagnosis to bring relief, but what I didn't anticipate was the grief. In some ways, it mirrors the grief of my cancer diagnosis--I'm grieving the life I thought I would have. I feel betrayed at approaching the finish line, only to see it retreat into the horizon. If cancer is the proverbial battle, when do I get to take a break from fighting?

I know I'm not the only survivor facing neuropathy. Any advice? Did you have a similar experience?

Camille

This is such a powerful and relatable sentiment—the idea of crossing the finish line only to be met with an entirely new type of marathon. The difference is that I’m brutally exhausted mentally, physically, emotionally, and spiritually going into this one.

I applaud you for challenging your care team and fighting to get this new diagnosis. That in itself is a specific type of labor.

While I was never diagnosed with neuropathy, I definitely had parallel experiences with what you are going through. The grief is huge. I don’t think enough survivors are educated on grief, as western medicine emphasizes the physical aspect of survivorship so much more than the emotional.

What has kept me going is continuing to think of my life as a giant experiment. I’ve removed the finish line entirely from the picture because our healing never really ends and for whatever reason, these are the cards I was dealt to live through. I have days where I’m incredibly bitter and enraged by my fate but I no longer feel ashamed or guilty of that.

One day at a time.