How to Understand and Work With Your Genetics
Contextualizing RCCX, MTHFR, epigenetics, and more
Your doctor has never mentioned your MTHFR status.
Nor COMT, or DAO, and they’ve probably never even heard of RCCX Theory.
The truth is they probably don’t know about these. Or they at least don’t know enough to tell you about them. Because the medical system was not built to help you understand how your specific body works; it was built to treat symptoms.
I used to “randomly” pass out in odd places. On the bus in San Francisco, while working at a cafe in the UK, on a subway platform in New York (while wearing a silk pencil skirt!). I’d go to the ER, they wouldn’t be able to find anything wrong with me, and they’d send me on my way. I barely saw any doctors in my 20s — with the exception of these periodic ER visits — but when I mentioned this to any primary care physicians they’d basically just shrug their shoulders and say, “You’re young and relatively fit, it’s probably nothing.”
After years of being told my symptoms were nothing, or anxiety, or “but you look fine,” I eventually landed on a cluster of diagnoses that explained nearly everything: Ehlers-Danlos Syndrome, Mast Cell Activation Syndrome (MCAS), Postural Orthostatic Tachycardia Syndrome (POTS), Small Fiber Neuropathy, and more. Each diagnoses a new thread. All of them interconnected. And underneath all of it, a genetic architecture that mainstream medicine refuses to acknowledge.
This is actually how I found the research on RCCX theory — I started searching for the connection between all these supposedly disconnected diagnoses, as well as the connection between highly intelligent, high-achieving, Type-A mostly woman who had developed some sort of chronic illness.
If you’ve been following along with Capitalism & Glitter here on Substack or on Instagram, you already know about RCCX theory — the gene cluster on chromosome 6 that many doctors and health researchers believe links EDS, MCAS, POTS, and a constellation of related conditions in a single, heritable genetic predisposition. If you aren’t familiar, you can read more in our article here:
That piece of the puzzle explains why these conditions cluster together the way they do, and why you might be more sensitive and prone to certain conditions than 80% of the population. But it doesn’t explain everything about how your body operates on a day-to-day level. Why you’re more reactive to histamine than other people even with suspected RCCX genes, why stress absolutely wrecks you in ways that seem disproportionate, why certain supplements help everyone else and make you feel like you’re on fire.
That’s where epigenetics comes in.
Epigenetics
Epigenetics is the study of how behaviors and environmental factors switch genes “on” or “off.” Without changing the underlying genetic code, your body changes how it reads your genes and whether it expresses symptoms of those genes or not.
While you can’t change your genetic code, you can change how strongly that gene expresses — through things like diet, exercise, and managing stress.
Dr. Ben Lynch, a naturopathic physician, national bestseller, and founder of Seeking Health, wrote a book in 2018 called Dirty Genes that was instrumental in helping me figure out how to support my health. This gave me a framework for understanding seven specific genetic variants that have an outsized impact on how your body handles methylation, detoxification, mood, histamine, hormones, and cardiovascular function.
If you have a chronic illness that mainstream medicine has consistently failed to explain, this is a rabbit hole worth going down.
Before We Talk Genes, We Need to Talk Mindset
Genetics are not everything. They are a blueprint for your body that is influenced heavily by environment. Many people have a very restrictive mindset around genetics — “I have X so I can’t do Y.” But your genes are not a death sentence, and they are something you can work with, influence, and in some cases, change the expression of with epigenetics.
There is a line of thinking that says talking about healing, optimizing, or changing the expression of genetically influenced conditions like EDS is ableist. That it implies sick people are doing something wrong. That it puts the burden back on the patient.
I get it. I completely understand where that comes from. Years of medical gaslighting will do that. When doctors have told you for decades that your suffering is a personal failing — that you just need to exercise more, stress less, think positive — the idea of more self-optimization can feel like another flavor of the same thing.
But there’s a difference between your structural architecture and your biochemical terrain. And this line of thinking can lock you into a victim mentality in which you never try to improve your symptoms (and, in my experience, these people are most likely to lash out at others who do find improvement).
EDS doesn’t go away because you fixed your methylation. Your connective tissue is your connective tissue. What you can change is the inflammatory load on top of it, the histamine bucket you’re carrying, the stress response that’s been stuck in overdrive since childhood — all of which weaken already fragile tissues.
Your detox pathways that are running at 40% capacity while your environment demands 100%. Supporting your body to operate at its version of 100% is a critical component of maintaining health.
This is why many people have EDS or MTHFR mutations with no “negative” symptoms. This is how Michael Phelps has won gold medals while pretty obviously having the genes for Marfan Syndrome. We over-focus on the negative connotation of various genetics, but very rarely do we talk about the benefits of these mutations — gifting some of us higher intelligence, or increased swimming speed, or the flexibility required to be a ballerina or elite gymnast.
You can have a chronic illness and still understand how you operate. You can have a genetic mutation and not have chronic illness. You can be a person with real, heritable, structural differences and be someone who has agency over how those differences express themselves. Understanding your genes and healing chronic symptoms you aren’t destined to have isn’t ableist. It’s empowering.
Now. Let’s talk about the genes.