When Your Chronic Illness Journey Takes an Unexpected Turn


I had taken an unexpected hiatus from blogging again. I didn’t plan to take a break this time – I had blog titles and topics all planned out, but no words came.

It turns out, I am not having surgery for my Chiari malformation, at least not anytime in the near future.

Instead, my new neurosurgeon, who was truly wonderful, patient and kind, wants to get me referrals to new local specialists in physical therapy, headache neurology and rheumatology, and see if we can try a multifaceted approach for decreasing my symptoms from those angles first.

I did not see this coming.

Don’t get me wrong: I am actually very happy about this development. Which is weird at the same time. I had built up this progression in my head of how things would go: my migraines and other symptoms, which I have had my whole life and are partially due to my Chiari, the worst of my multiple chronic conditions, are getting worse, so clearly I would need to have surgery. I didn’t want surgery, but I had finally accepted it, because I figured that was the only option.

Except then, I spent an hour talking to someone who had dedicated his life to studying Chiari malformation and other disorders of the brain and spine who is telling me that at this point in time it is not my only option.

Looking at my MRIs was reassuring. I don’t have any blockages in flow or any syrinxes on my spine. For those of you who don’t know anything about Chiari, that means two things: 1. the surgery isn’t 100 percent mandatory at this point in time, and 2. it might not even be effective at this point in time.

At the beginning of the appointment, when I could tell things were going in the “no surgery” direction, I felt like screaming and totally shutting down from anything the doctor had to say.

But the more I processed it, the more what he was saying made sense. He said he treated his patients like family, and I believed him. He was trying to spare me from a painful surgery and long recovery he didn’t see cause in. He wanted to try every angle before rushing. And the only reason I was so opposed to it is because I had convinced myself surgery was the only option. Even though I truly didn’t even want that option to begin with!

There is still obviously a long journey ahead. Part of me wanted the surgery because it was a “quick fix,” even though I know from research it is anything but. Chiari is not a curable condition – even with surgery, all that can be done is slow down progression of symptoms, so if that can be done in non-surgical ways somehow, I am more than open to exploring these new paths in the desert.

With any new journey comes new emotions to unpack as well. Some of the new feelings I’m exploring are feeling unworthy, “not as sick” now that I don’t need surgery right now. Will other people think I’ve been faking my conditions the whole time now that there’s no imminent surgery on the timeline?

What I’ve been trying to remind myself of is a few things. One, my worth does not come from my health, lack of health or people’s opinions of my treatment plans. And two, I am my own worst critic of all of those things. My support system, both close and farther removed, just wants the best for me. They are happy for me that I’m not having brain surgery – and I’m happy, too. That door isn’t closed for good, and I will be revisiting the surgeon in six months to a year, but for now, I will be exploring the journey at this new vantage point.

This post was originally posted on Writer Kat.

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