Yes, you can even overdo MECFS recovery

It's hard to say why the gaslighting we experience from our loved ones, coworkers and medical community hits so hard. The isolation? The being misunderstood? The being forced to crash from a lack of understanding and having to go beyond your baseline? They are all strong contenders.

But I think one of the reasons it hits so hard, is because being told your lazy, not sick, or playing a victim so deeply goes against the type of personality that so often seems to be afflicted with MECFS. 

I have NEVER met someone with MECFS who hasn't tried a million things to get better.  Everyone is different, of course. But if we were to stereotype people with ME/CFS, I would say they are some of the most hardworking, determined, resilient, and solution-oriented people you will ever meet. They are a people who don’t give up easily. A people who keep searching, keep trying, keep pushing forward, even when nothing seems to be working.

When you meet someone who no longer believes in recovery, it’s usually because they tried everything and nothing worked. And giving up on the idea of it was the only way to find peace. 

People with MECFS aren't lazy. They struggle so badly with sitting still, because they want so badly to live. And while I cant speak to all of them, I know for myself and so many I've worked with, it's a real struggle to go from someone who could find a solution or work around for anything, and who prided themselves on achieving, to suddenly not be able to do anything but surrender. 

Laziness? Seriously. Those people can go pound sand.  

Still there’s something I don’t see talked about very often on the other side of the gaslighting, and that’s what happens when you want to recover so badly, that it becomes just another thing you try to achieve or do "right." 

Because if you are someone who is naturally driven, goal-oriented, and resilient… you don’t suddenly stop being that person just because you got sick. Instead, you redirect it.

You can't run marathons, or build a business, or push yourself to do any number of things in the ways you used to... and so you start trying to “win” at recovery.

Maybe you fill your day with nervous system work. Doing a ton of somatic practices and checking them off a list with vigor. Maybe you have a million pacing and symptom trackers. Maybe you've got a number of protocols that you make sure you do every day if your energy allows. With any remaining energy, you are researching, talking to people in recovery spaces, or watching videos. You're doing anything you think will move the needle forward. 

And on the surface, it looks like you’re doing everything right. Yet nothing meaningful seems to be happening. And why? 

Because underneath all the healing protocols and practices…

There’s still urgency.

There’s still pressure.

There’s still that subtle, constant feeling of:
“I need to get better. Now." 

And the sad, cruel irony of it all my friend is this: Urgency is the opposite of what your nervous system needs to heal. 

If you are anything like me, ME/CFS will be the first time in your whole life where doing more is not the answer; trying harder does not yield results and adding on more tools won't guarantee any progress.

MECFS is not just about what you do. It’s about the state you’re in while you’re doing it. And if I may be so bold, I think the state matters even more than what you do. 

So if your entire day is filled with recovery tasks, but your system is still in a state of constant activation… if there is still pressure, still striving, still that low-level sense of needing to fix yourself…still micro managing your recovery, still judging every crash as failure, still feeling urgency...

Then you never actually experience the thing you’re trying to move toward.

Relief.
Safety.
Regulation.

When I realized that I could even overdo recovery, it seemed like a truly cruel joke. I could check every box, follow every bit of advice, and do everything right, and still feel and stay completely stick. I could only be the person I was, and so I felt ultimately trapped.

So how did I actually start to get better? 

Well, I did not throw caution to the wind. Or start letting myself just do whatever I felt up to do. I didn't ignore my limits. I also didn't let myself give up all my protocols, deciding that none of them matter. 

What I did was something more subtle. I changed how I thought about discipline. It was no longer this black and white, self flagellation. It was about aiming for the arch; looking at movement over a longer period of time. I also took breaks from healing. I realized that it's perfectly ok to have a season where you stop trying so hard to fix yourself. Where you stop turning recovery into another achievement. Where you step out of the constant checklist, and let yourself just exist for a little while.

It's ok to be sick. And it's ok to just BE. 

And isn't that the hardest things for any human being to do… to just BE? To embrace stillness and being.

And ME/CFS, in many ways, asks that of us. It begs us to recalibrate how we measure health, and the pathways by which we always got there.

If you notice that your entire day has become filled with doing recovery… if it feels like pressure instead of support… if instead of providing you with a soft place to land, you feel like you an in pressure cooker trying to get it right -  it might be time to pause.

Not forever. Just long enough to remember what it feels like to not be chasing. My friend, you are not behind in this journey. You are not doing recovery wrong. You can't do it wrong. It's all a learning process.

Sometimes the most supportive thing you can do for your system…is to just let it be.