How To Rebuild Trust With Your Body

One of the most devastating aspects of ME/CFS is the complete loss of trust within your own body.

Before this illness, most of us had a kind of quiet, synergistic relationship with our bodies, where if you asked it to do something, it would do it.

There was a normal, expected relationship between activity and response. If you exercised, you expected to be sore. If you went to a concert, you expected to be tired. There was a predictable cause-and-effect relationship, and you trusted it.

But after ME/CFS, that relationship gets completely hijacked, and the whole experience becomes scrambled. Activity and response no longer exist in a normal or reliable way. Your new normal is a Frankenstein version of regular life. 

When I was mild, I noticed this most clearly when I would try to exercise. Working out didn’t follow a normal cause-and-effect pattern anymore. Instead of making me feel better, it caused flu-like symptoms, a hangover-like feeling, and increased sensitivity to light and sound. It made no sense, especially when you’ve been taught your whole life that exercise is supposed to be good for you. (And even more so because every single doctor told me that I was perfectly fine.)

As I became more severe, that breakdown of trust within my body slowly deepened. Something as simple as brushing my teeth, rolling over in bed, or hearing a loud noise could leave me with increased symptoms and reduced function for weeks. What made it even harder was that it didn’t feel predictable. Some days I could do something and be fine, and other days I would pay for it for days, weeks, or even months. It felt like chaos—like there were no rules at all.

Over time, what this did to me, and what it does for many others with ME/CFS too, is erode trust in the body. You stop believing your body is safe to move through the world in. You no longer go about life without analyzing every decision, every action, every potential consequence. It's exhausting. It's terrifying. 

Your lived experience shows you that activity can lead to PEM, and because PEM is deeply unpleasant at best, and baseline-lowering at worst, the last thing you want to do is bring it on. So the days of moving through life freely, without constant consideration, are now gone. Everything becomes calculated.

In recovery, part of reverse engineering this cycle is rebuilding trust again. Not only because this level of hyper-vigilance keeps a system that is already dysregulated in a constant state of stress, but because the goal is to be able to live in a body that feels free again to move however it wishes. 

And this is where it gets complicated.

Because we can’t just push our bodies. We can’t gaslight our baseline. The body knows where the "soft fence" is, and the body is the boss. Depending on how sick we are, we can’t even move very far beyond the “soft fence” of our baseline without triggering PEM. And although PEM itself can be a part of recovery (which is too complex to get into today), we want to be careful about how we engage with it or bring it on. 

If we consistently crash every time we try to expand, we reinforce the idea that activity is dangerous, and that only increases vigilance.

So with all of that said - the question begs to be asked... how do we rebuild trust?

How do we begin to return to a more normal way of being in our bodies?

The answers is: by starting very, very small.

It starts with doing the tiniest thing again, in a way that feels safe, and more importantly, consistent. Consistency is key. I call this your “micro baseline,” or what you can do daily without creating significant additional PEM.

From there, the goal is to take something you cannot yet do consistently and slowly, and gently integrate it into your baseline. We do this through what I call the "expansion/contraction cycle." (Pillar 2) 

It’s also important to say that this is just one piece of a much larger framework. No single tool is a magic bullet. Rebuilding trust is where pacing, expanding, and nervous system work must come together.

Because when I was severe, I didn’t trust my body to do anything. Not even something as simple as rolling over in bed. Nothing felt within reach. And let me tell you something, that is a very small baseline to live inside, and it can feel like a very deep hole to climb out of.

Climbing out the hole meant rebuilding trust with every single activity that I once took for granted. Brushing my teeth. Going to a doctor’s appointment. Socializing. Traveling. Every single task lost had to be reintegrated and separated from an association with MECFS. 

And even as my life began to expand again, new questions emerged.

Can I exercise? Can I hike? Can I drive? Can I socialize? Is this safe?

At every stage, the same tools had to be reintroduced and reinforced, as I integrated activities that once felt impossible. That’s why one of the most important parts of recovery is learning how to come back into relationship with your body again.

So I’m curious— What is your relationship with trust like right now? Do you trust your body? Or does it feel unpredictable… even unsafe? Answering those questions is the starting point. They will tell you which pillar to start with, and how to bild recovery.