The first calculation happens before I open my eyes. Did I sleep? How much? What do I have to do today, and what just kind of needs to get done? I run the numbers in the dark, still horizontal, already tired, deciding what yesterday cost me and how much I have to give today. And then comes the quiet relief. The kind only a certain kind of person understands: it's not a hair wash day. Because taking a shower is one thing, but a hair wash day is another thing entirely.

 

People with chronic illness wake up with fewer resources than healthy people. We call them spoons. Sometimes my drawer is full. Sometimes I had to borrow today's spoons for something I had to do yesterday. Sometimes a shower costs one spoon. Sometimes two. Sometimes just getting up to go to the bathroom costs a spoon. Anyone with chronic illness knows you don't make plans without first checking your inventory.

Chronic illness gave me things I didn't want: fatigue, blood sugar imbalances, pain, brain fog, anxiety. But it's what it took away that has been the hardest to recover from. I started saying no to things I loved because I didn't want to pay for it the next day. But the more it cost me, the more plans I cancelled, until I stopped saying yes altogether, too afraid my body wouldn't be able to cash the check it signed.

The hardest part was explaining the kind of unpredictability that comes with chronic illness to someone who has never lived it, and I grew tired of trying. Being alone felt easier than watching confusion and pity move across someone's face. But that isolation only made things worse. When you stop feeling like a contributing member of society, you lose your sense of worth. It stops being about your chronic illness and starts to feel like who you are.

The guilt came first. Guilt for canceling, guilt for resting. Then guilt turned into anger at my body for not keeping up with the life I wanted. And still I kept pushing, because my will and determination were going to be stronger than my chronic illness. Even as a nurse, following every recommendation, there were still no real answers.

A diagnosis of cancer, for most people, feels like the beginning of the end. For me, it turned into a new beginning. That thyroid cancer diagnosis was the last message my body sent me that I finally heard. After surgery, my blood sugar crashes became more frequent, pain and tension worsened. I started having dizziness and fainting episodes where my vision would go blank. My stubborn willpower was no longer a match for the fatigue and depression that followed. With nothing else to lose, healing my body became my full-time job.

When my surgeon ran out of answers and pointed me toward the autonomic nervous system, the puzzle pieces started coming together. Not just for me, but for so many patients still being told their symptoms were stress, anxiety, or just their hormones.

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Even knowing the nervous system's role in influencing every other system in the body, I didn't realize my nervous system had been signaling threat instead of safety, keeping me stuck in  survival mode for years. And the more I analyzed my body and my illness, the more threat it read in return. But then came one big realization: my body was not failing me. It was trying to protect me.

We all override that first urge to use the bathroom, sometimes until we are ready to pee our pants. We ignore thirst until its hunger, push through exhaustion until our body forces us to stop. I have learned when you don't listen, your body just gets louder.

Imagine a child, hungry, tugging at your sleeve, and instead of feeding them you say, stop complaining, just go play. You would never say that to a child. But we say it to ourselves over and over and pride ourselves on it. We live in a culture that looks up to the overworked, the over-scheduled, the ones taking on more than they can handle, and glorifies them. 

In a plane crash, they tell you to put on your own oxygen mask before the person next to you. And yet how many of us are pouring from an empty cup and never filling it back up? This was just how I was taught to live. Society reinforced that is how you become successful. I didn't know it was slowly making me sick and stopping me from being able to fully recover.

So slowly, I started to listen to what my body was asking for. It wasn't always easy, especially not guilt free. But once I fully embraced caring for my body the way I would care for a child or someone I loved, everything changed. My flares didn't last as long. My pain wasn't as severe. My body learned that I would care for it when it needed me, and so when I needed it to show up for me, it did. That relationship became the most important one in my life. Because if that foundation isn't strong, I can't be strong for anyone else.

When my body was finally ready, I knew I had to give back, and I knew I had to do it differently. Healing from chronic illness doesn't happen in a 15 minute office visit every three months. It is a highly personal experience. And I am grateful to now have the privilege of walking others through that same healing, the way I wish someone had walked with me.

So for those of you still waking up and doing that morning math, still counting spoons, canceling plans, and isolating: there is another way. And on the other side of it is your body, your life, and everything you stopped believing you could still have.

We are not meant to just manage. We are meant to live.