Saying no isn't a luxury; in MECFS its survival

This morning, I made the decision to take the entire day off. I had plans, and I cancelled them. I had a coaching call, and I rescheduled. I had a laundry list 100 items deep of things I needed to get done, and I postponed them all. My phone rang, and I didn't answer. People texted and I felt the impulse or pressure to respond, but didn't.

You're probably reading this thinking "she must have felt burnt out, and taken the day off to protect herself." But actually, I felt pretty OK. I did this today, for one reason and one reason alone; to flex the muscle of NO.

Because saying NO, like meditation, self-care, yoga - is a practice. And like any practice, you need repetition to master it. 

And that is what I want to talk about today; saying NO without guilt, and holding firm boundaries. This is something that doesn’t seem like it has anything to do with ME/CFS at first glance. It's also a concept that is often convoluted in ME/CFS spaces as if talking about is means the illness itself is psychological. (It's not). 
 

So let's talk about why saying NO to people is directly tied to the physiological reality of ME/CFS.

This skill is something we talk a lot about in "pillar four" of my work, which is more about lifestyle, identity, the way that we relate to the world and how all of this can have an impact on any and all attempts to get well.

And I know that even by typing this, I might get some flack for it. Because for some people, there is no room for talking about relational patterns and MECFS. 

To these people I would say; I simply disagree. 

Because if you are someone — like I was — who has MECFS AND who also tends to overdo, overachieve, take on too much, push beyond your limits, and struggles with relational and energetic boundaries…  pacing becomes almost impossible.

And as we all know, pacing is essential. 

But it goes deeper than that... because if your sense of worth is tied to being the reliable one, the helper, the giver, and the one who shows up no matter what... then saying no is going to have a huge electric charge to it and really activate your nervous system.

It will feel like you're failing people. You will feel drawn to help even to your own detriment. And this  will also have consequences for how you manage ME/CFS.

Let's take a deeper look at exactly what I mean.... 

A woman, we’ll call her Jamie, was in one of the first cohorts of my program, The Edison Effect, began applying the principles of the 4 pillars and was seeing progress rather quickly. However, she really struggled to get out of the boom-and-bust cycle. Through the use of an evidence journal, she began to identify an important pattern in the push-crash cycle: her inability to say no.

She was deeply struggling with putting her recovery first, and it always took a back seat to making sure that others’ needs were met.

If someone came to visit and stayed too long, she couldn’t ask them to leave because she felt bad about it.

If her daughter needed her to babysit, she said yes even if she knew she’d wobble — because her daughter needed her.

If her boyfriend wanted her to come over for the weekend and had expectations around cooking or dishes, she couldn’t find her voice to say that it wasn’t within her baseline.

These people were used to her showing up in their lives as a certain person, and the truth was, saying no wasn't just about letting them down; it was a crisis of identity. And so every time she began to build capacity, she unintentionally spent it on others, and as a result, she couldn't make any progress in expanding. 

Over about 18 months, it became clear that "pillar two" — the expansion/contraction cycle — wasn’t the pillar she needed to work in order to build a new baseline.

It was pillar four. Personal transformation.

So that is exactly what she did. Over the next year, she did a ton of relational work within herself, began to flex the muscle of saying no and putting herself first. Her self-worth grew, her voice got stronger, and her nervous system began to relax as her self-trust returned and she gave her body what it wanted.

(In truth, the body will never fully trust us if we don’t live in integrity with what it asks us to do; that is the severe mercy of MECFS; it leads us back to ourselves.)

And then something, finally shifted.

In the last year, Jamie was finally able to move into pillar two work again — setting expansion goals and being able to meet them. And for the first time, she began making real, sustainable progress.

This, my friends, is the unique, multifaceted work of The Edison Effect.

It’s not about a singular solution. It’s about identifying which pillar will create the most movement where you are right now… and then watching your baseline grow and your life expand — until you inevitably reach another edge.

That edge can look like a setback, but it’s actually an invitation to get curious about which pillar is asking for your attention next.

As we move a new pillar to the forefront of recovery, we reinvest the capacity we’ve built in the last one. We meet the edge, we respond to what’s being asked of us, and over time, all four pillars become part of how we live.

As your capacity grows, the world — which for many of us is kept at arm’s length during illness — begins to flood back in. And as the world gets bigger, so do the responsibilities, the expectations, and the demands on your system.

And that means the work evolves too.

Every new baseline requires new awareness. Even after we recover, we continue to deepen this work — not because we’re broken, but because this is what it means to live in alignment with our body.

This is what makes The Edison Effect different.

It’s not a quick fix. It’s not a cure. It’s not a bypass. It’s not a treatment.

But if you approach recovery as a framework — not a gimmick — it has the potential to transform not just your health, but your life.

So...if you take anything away from this letter today, let it be this: 

If you can’t say no when your body needs you to say no, you will keep pushing. And if you keep pushing, you will keep crashing. And if that becomes your way of living, recovery will likely remain out of reach.

This isn’t just about boundaries as a self-help concept. This is the physiology of ME/CFS as a neuroimmune illness. Anything that activates your nervous system needs to be taken into account — including your relational world. In fact, relational triggers can sometimes create harder crashes than physical ones.

My friends - that is the TRUTH of how I built Pillar 4. I built it out of necessity, from my own lived experience of how powerful relational stress can be. 

I won’t lie to you — this was really, really, really hard work. But it became a huge part of my recovery. Learning to say no. Learning to have boundaries. Learning to let people be disappointed in me. Letting them misunderstand me.

Just, letting them. 

 But it was ultimately the only way that I was ever able to truly pace and expand. I learned that saying no is not a luxury. It is an act of survival. Protecting my recovery had to become non-negotiable. It had to become something I coveted, and protected. Something sacred to me. 

Saying no is not a luxury. It is an act of survival.