You may have heard the part of my story where I’ve shared that I’ve had a variety of chronic illnesses. After the first 5 years of bumbling my way through our traditional medical system trying to find something to make me feel better, I stumbled upon a workshop called “Fatigue free in 4 days.” given by a clinical nutritionist.
I learned that food was my fuel and I dramatically altered what and how I was eating. It was a critical first step towards greater health and I began to feel so much better. That was my initial introduction into the world of natural and holistic health.
Over the past 20 years, I’ve been able to heal most of my chronic illnesses using natural health approaches: mental, physical, emotional, and spiritual. Up until the Summer of 2018, I was only dealing with my hypothyroidism and feeling quite well as I landed in my new village of Saxapahaw, NC.
In October 2018, I was stricken by yet another mysterious chronic illness. After a couple of doctors’ visits as well as my own online sleuthing, I found that I had Mast Cell Activation Syndrome (MCAS). Traditional medicine wanted to throw prescriptions at it, but I intuitively knew full well that something else must be triggering the MCAS. The body strives for homeostasis and I wanted to find a way to help it. I’ve done it before and I knew I could do it again.
This February, I discovered something different about my new and past chronic illnesses: I actually have a gene mutation that’s been causing them. It’s called Ehlers-Danlos Syndrome, hypermobile type, a connective tissue disorder. It causes my connective tissues to be “too porous” than they should, which makes my joints unstable and bendy; allows things into my bloodstream that don’t belong, causing allergic responses, infections, and inflammation; causes my autonomic nervous system to misfire (heart, lungs, etc.); impacts my brain’s ability to operate well; and makes my digestive system dysfunctional. Connective tissue is everywhere in the body, which is why it causes all of these seeming disparate problems. I serendipitously was referred to a functional nutritionist who looked at my whole back history, did some research, and discovered that hEDS is part of the RCCX gene phenotype was likely the root cause (RCCX is a theory that has yet to be researched).
In addition, my body is predisposed to stress because the gene mutation causes my body’s danger response, specifically the “freeze” response, to be constantly heightened. It’s what is triggering the MCAS and it’s what triggered my other chronic illnesses as well.
Since my diagnosis, I’ve been riding the ups and downs of this new iteration of illness. The most common symptoms for me are anaphylactic reactions and blood pressure drops, causing me brain fog, blurry vision, lethargy, and ice cold body temperature. In addition, I experience spontaneous muscle seizures in my neck/back as well.
I’ve started a supplement regimen and we’re going through some in depth testing to see if anything else might be stressing my body. I won’t lie, it totally sucks sometimes! Yet it is also a true life lesson opportunity:
Pain is inevitable but suffering is optional.
Like my past illnesses, I’m sure that I will find a way to manage it so that my quality of life isn’t impacted. I definitely have days where it all feels overwhelming and painful. Yet it doesn’t serve me to “put my tent up” on the condition and suffer in it. I can look at my personal and spiritual growth opportunities in this as I make my way through.
A fun fact about the RCCX Theory is that it’s been found that those who have it are gifted, highly intelligent, sensitive, and intuitive people. I’ve been spending some time looking at it as my secret superpower. :0)
I have a lot of good days and my bad days can feel really bad and unproductive. My flares are unpredictable, which causes a bit of fear, wondering when and where they might come. Yet, I’m blessed that I’ve created a life and business that allows me a lot of flexibility to manage through while still serving my clients well.
My biggest lesson this time around is to be super fierce about what works for me and what doesn’t – in life and in my business. I’ve been making some tweaks to adjust to my new normal… and I’ve found places where I’ve created a bit of undue stress for myself. It feels really good to release those.
As I’ve been reflecting on my experience, I wanted to share a handful of gems that I’ve gleaned so far. My hope is that these can help you as you face challenging situations in your life – so that you can move through the pain and not suffer:
1) Be present. Skipping over the pain only causes it to be worse. The only way out is through.
2) Seek support. There’s a fine line between solitude and isolation. Sometimes, we just need to hear ourselves think out loud.
3) Use experts. You don’t know what you don’t know. If you’re facing something new, reach out to those who’ve been through it before.
4) Tap in. Even with all the facts, you are the only one who can make the best decision for you. Use your intuition, pray, listen to your gut, meditate, or whatever process is right for you.
5) Receive. When people offer to help you, say yes. Sure, you’re independent and all, but at times like these both you and the helper can benefit.
6) Allow. How you process pain is yours and yours alone. Others don’t always understand. Do your best to follow your own path through so you can find your way out.
If you know anyone who suffers/has suffered from multiple chronic illnesses, please direct them to this website or this Facebook group so they can see if they might also be impacted by the RCCX gene mutation. I’ve found valuable support and resources there.
Christine Clifton is the author of “You don’t have to shout to Stand Out” and teaches soul-powered entrepreneurs how to keep their inner fire burning so they don’t burn out. By building a fun, co-creative relationship with their business, they better align their practical DOING with their natural BEING and gain focus and energy. They have fun with their work again, feel better than they have in a long time, and see more of the right leads and opportunities come their way….. and they Thrive!