When CIRS treatment doesn’t work
I want to tell you how this post almost went:
My first draft was packed with research: fifteen studies, a lot of numbers, and a reference list at the bottom. Every claim I made was backed up.
But as I wrote it, I noticed it was working against the very thing I wanted to say. This post is about relationship: what it means to be heard and supported when you’re sick. And I was writing it like an expert trying to win an argument.
Then my wife, Eve, told me something I’ll never forget: When you’re trying to be the smartest person in the room, you stop attuning to the person in front of you. You mis-attune. You miss what they’re actually feeling, and in that moment, you’re no longer with them.
And just like that, my perspective on treating CIRS shifted…
If you live with Chronic Inflammatory Response Syndrome (CIRS), you’ve probably felt that from the other side. You’ve sat across from someone who knew a great deal, yet who never quite got you.
So I’ve set the studies aside for this one. They’re still true, and I’ll gladly share them with anyone who asks. But this time, I’d rather just be with you.
You know what to do. So why can’t you do it?
Maybe this sounds familiar:
You finally found a name for what’s been happening to you. You learned the Shoemaker Protocol. You could probably walk me through it, step by step.
And yet you’re stuck.
Maybe your home hasn’t been tested yet. Or it has, and the report is sitting in a drawer. Maybe a remediation quote made your stomach drop. Maybe you bought the air purifier and started cleaning, and then a bad week came, and then another, and the plan quietly slipped away.
And underneath it all, there’s a voice: What’s wrong with me? Why can’t I just do this?
You’re not lazy. You’re not failing. And you’re far from the only one.
Why treating CIRS is so hard
I wish someone had told you this at the start:
CIRS steals from you the very things a plan needs. CIRS makes it impossible to remember, to focus, and to hold a sequence of steps in your head. Layer on the stress of being sick for years and all of this becomes harder still. Us well-meaning practitioners then hand you, the patient, one of the most demanding plans in chronic illness. And we wonder why sixty days later you didn’t get anywhere.
Facepalm.
When my wife, Eve, was doing her Shoemaker training she commented: you need to be a CIRS doctor in order to learn to be a CIRS doctor. She couldn’t be more right. If you have CIRS, I’m sure you can relate to the uncountable number of hours you’ve invested in understanding what’s happening with your health.
As if understanding CIRS wasn’t hard enough, then we tell you: surprise, the first step of treatment isn’t a pill. It’s a project. And by the way, you also need to be a building expert and mycologist now too. Testing your home, finding the water damage, deciding whether to fix it or move, retesting, monitoring the air quality, etc. etc. etc. All of it on your own time and money, often on days when just getting out of bed feels like a heroic effort.
Then there’s the silence between appointments. You leave a visit with a plan and a bit of hope. Three weeks later the plan has slipped, and no one has noticed.
I’ll be honest: that has happened in my own clinic. People have gotten stuck between visits, and we didn’t know until they told us.
In my experience, almost everyone who gets stuck is stuck for one of two reasons:
- They’re overwhelmed
- No one followed up
This means being stuck is rarely a problem with you. It’s a problem with how the care was set up. And that can change.
The part that rarely gets talked about
Many people with CIRS have spent years in care that was done to them. Tests ordered. Plans handed over. Supplements or medications were dispensed. Their own sense of what was happening in their body brushed aside. Some were told it was stress, or anxiety, or all in their head.
The binder caused worsening fatigue and brain fog?
That’s not possible. The binders stay in your gastrointestinal tract and don’t get absorbed. They couldn’t possibly worsen your fatigue or brain fog… Just like that you’re getting gaslighted again. This time by the very person you thought was going to help you!
If that’s been your experience, I’m sorry it happened. You deserved better.
That kind of care doesn’t only hurt. It makes treatment harder. When you don’t feel heard, you stop saying what isn’t working. And a plan that never hears back from you can’t change to fit your life.
I believe it goes deeper still. When you’ve been sick for a long time, your body can get stuck in a protective state, right down to your cells, as if the danger never left. It won’t fully recover until it senses it’s safe. And it’s taking in signals all the time. A home with hidden water damage tells your body it isn’t safe. I think being dismissed by the people who are supposed to help you does too.
This isn’t prose or metaphors. Your cells actually do change their behaviour when they sense danger. It’s called the cell danger response. And it’s what happens when a body is overwhelmed.
What’s the antidote to danger?
Safety. And that’s what we practice here at Flourish.
How do we practice safety?
We believe you. We hear you. All of our interactions are based around a single intention: you feeling safe here.
No one has studied this in CIRS yet, so I hold it as a belief, not a proven fact. But it’s a belief I’m willing to build my clinic around. I don’t see the care relationship as a nice extra, or good bedside manner. I see it as part of the treatment.
What it looks like when care is done with you
So what helps?
Usually not more information. You probably have plenty. What helps is a different kind of care. Here’s what I believe it looks like.
- Steps small enough for your worst day
- Not your best day. Your worst. A step you can manage on a terrible day is a step that will actually happen. Big decisions get broken down too.
- You know why each step matters
- Not a lecture, just a clear map. When you understand why your home comes first, wiping down a baseboard stops feeling pointless. It becomes one step closer to a home that tests clean.
- Someone walks with you, every week
- Not to check up on you. To notice. If things slip, someone reaches out within the week, not months later. And while the illness has taken your ability to plan and keep track, someone else can hold that for you. As you get stronger, they hand it back.
- More than one set of eyes
- CIRS reaches into your home, your body and your nervous system, and no one person can see all of that. A good team looks from different angles (a practitioner, an environmental expert, a health coach, a therapist) and works from one shared plan, so nothing gets lost in between.
- Your voice changes the plan
- When you say something isn’t working, the plan should change. Your preferences count, too. You know your life, your home and your limits better than anyone. Care done with you is far easier to carry out than care done to you.
- The truth, told kindly
- Sometimes a home can’t be made safe with the money that’s available. If that’s where you are, you deserve to hear it plainly and gently, and then to have someone stay and help you work out what’s possible.
If you’re stuck right now
If you were sitting across from me today, here’s what I’d want you to hear.
- Pick one step, and make it tiny
- Small enough that you could do it on your worst day this week. One phone call. One photo of the stain under the sink.
- Tell someone
- A partner, a friend, your practitioner. Ask them to check in with you on Friday. You don’t have to carry this alone.
- Shrink the big decision
- If there’s a choice you’ve been avoiding, you don’t have to make it today. Find the smallest piece of it, like reading one quote, and do just that. Or hand it to someone you trust.
- Say what isn’t working
- If your care doesn’t feel like it’s listening, tell them. You’re allowed to ask for care that hears you.
- Go easy on yourself about the weeks that slipped
- Missing a day, or a week, doesn’t undo what you’ve already done. Start again from where you are.
You haven’t failed
If you’ve been stuck, you haven’t failed the protocol. The protocol has failed you. You were handed a hard plan at the moment you had the least to give, with too little support between visits, often after years of not being believed.
The two most common reasons people get stuck, overwhelm and being left alone between appointments, are also the two most fixable. Neither needs a medical breakthrough. They need humans.
At Flourish, we’re rebuilding our care around exactly this: someone from our team nearly every week, a team that sees you from every angle, and a plan that changes when you tell us it isn’t working.
The protocol is a good map. But nobody should have to walk it alone.
If this put words to where you’ve been stuck, my free guide to CIRS walks through what to test, what to fix first, and what to expect along the way. Download the guide here.
And if you’d like to talk about where you’re stuck, book a consultation. We’ll listen first. Then we’ll look at your results and tell you honestly whether we can help.
This post is part of a series on what CIRS treatment misses. Start with Why Your CIRS Treatment Didn’t Work, or read on to The Gastrointestinal Tract and CIRS.
