There’s a part of my MCAS journey I really don’t share that often, mostly because it still makes me feel really frustrated every time I open social media and am reminded.
When things first got bad, I did what anyone would do. I went looking for answers. And not just casually, I’m a practitioner, which meant I had access to the trainings, the seminars, the practitioner-only protocols, the “best” brands, the supplement stacks everyone swore would stabilize a sensitive system.
I wasn’t sitting on Google at 2 a.m. hoping I’d stumble across a miracle. I was in rooms where people spoke with certainty. I had the resources. I had the education. I had the tools.
And I remember thinking, Okay. If anyone can get traction quickly, it should be me.
That’s what made it so brutal when it didn’t work.
I can still picture myself on my couch, reading yet another post from a big account that everyone trusted, telling me exactly what to do. It was written so confidently.
- "This is why you're dealing with MCAS.”
- “You may be deficient in this if you have histamine intolerance.”
- “Add this supplement to stabilize and support histamine.”
- “You need to detox this if you're dealing with MCAS”
I followed it like a rulebook because I wanted it to be true. I wanted to feel the relief that was being promised.
Instead, I’d try the thing, wait, watch my body, and then feel that familiar increase in panic and doom like I could jump out of my own skin… or got worse, I would end up in a full flare hoping I didn't end up in the emergency room.
So I’d go back and ask the question no one wants to ask: "Why isn’t this working for me?"
At first I assumed it meant I was missing something. That I needed to do it better, longer, cleaner. That I needed to be more disciplined, more dialed, more perfect.
But after enough rounds of that, it stopped feeling like a “learning curve” and started feeling like a mind game. My body was clearly rejecting this approach.
Because if the best advice doesn’t work, it doesn’t just make you frustrated. It makes you doubt your own reality.
I started having thoughts like, "Do these people actually know what they’re talking about? Am I the outlier? Am I the problem? Is my body really that messed up?"
And I don’t mean that dramatically. I mean that quiet, deep and scary doubt that shows up when you’re alone with your symptoms and you’re doing everything “right” and it’s still not landing the way it was promised. Especially as a trained practitioner...
There was a point where I felt myself just wanting to give up. The kind where you stop believing anything will help because nothing has helped yet and honestly, it kind of gets dark.
But I didn’t have the option to walk away from my body. I had a life to live for. A husband who loved me. Three golden retrievers who counted on me. A family that supported me. A future of freedom with my health to look forward to. I had come TOO far to give up.
So I did the only thing I could do: I stopped trying to force my system into generic advice, even when it came from the biggest accounts, the best doctors, the most respected trainings.
I started listening to what my body was actually doing instead of what it should be doing according to someone else’s framework. I started building a different path, one decision at a time, based on what was real in my body, not what looked good on paper. I had to walk UNCHARTED territory that I didn't even know if it would work...
And that’s the part I want to put words to here, because I know how isolating it is when “everyone’s answers” don’t work for you. I know how it makes you question yourself. I know how it can make you feel like you’re failing when you’re actually just living in a body that doesn’t respond to one-size-fits-all guidance.
Some conditions don’t heal through generic advice. They never have. They require lived experience, nuance, and an approach that respects the actual person in the body.
That’s what I wish someone had told me sooner, so now here I am sharing with you.
— Amanda
