A (mostly) Healthy Blog

I recently had dinner with a friend who’s a functional medicine practitioner, and our conversation drifted to the cluster of conditions commonly seen in complex chronic illness. This wheel of maladies started as the Pentad, then grew to the Septad and now has a dozen recognized comorbidities. 

She asked me which of these ailments I thought was the starting point for everything else that follows. I answered that I believe everyone’s onramp is different, but once you’re on the wheel it’s then extremely difficult to get off. 

This conversation stuck in my head, and later I was thinking about a carousel and what a fitting analogy it is. I wrote the following from my own experience with over a decade of complex chronic illness.

The carousel is spinning slowly enough for anyone to easily come and go. Hypermobility and fragile connective tissue take a spin with tethered cord syndrome in tow. Some viruses join them, playfully jumping on and off, as the carousel’s rotations go a hair faster. ME/CFS slinks into a seat hoping to take a nap. Soon mold has joined the group, as the carousel’s speed continues to accelerate. MCAS leaps on board—and immediately reacts to every one and every thing—as it’s trailed by gastroperesis and SIBO. 

Again, the rotations quicken. Next an autoimmune condition hitches a ride. CCI stumbles on, followed soon after by dysautonomia, and the speed is beginning to be dizzyingly fast. Lyme disease and some co-infections see a window and take a leap, clinging to a pole for dear life, as the carousel spins threateningly out of control. Suddenly the carousel is spinning so rapidly, no one can get off. 

The passengers scramble to find seats or a surface to hold onto, as they call out for help. Occasionally one or two poke their heads outside the circumference of the spinning wheel to assess the outside world, but all hope seems lost. The frightened passengers are all on edge; digging in their heals for safety while arguing with one another over who’s at fault. It’s hard to hear the voice over their bickering, until the shout gets louder. 

“I’m here to help!” The passengers timidly peer outside to see a person offering an outstretched hand, again shouting, “I’m here to help! But you’re going to have to take a leap of faith!” Everyone on board stiffens, as in an odd way they’ve grown accustomed to their wild ride. They shift in their seats, looking around shyly to see if there are any brave souls on board. 

Slowly—so as not to pass out or fall over—CCI stands up, tiptoes to the edge, and when the outstretched hand nears, it takes the leap. It’s a rough landing, and the incision will require a few stitches, but pretty soon CCI is all patched up and returns to the carousel to see that it has slowed ever so slightly. It calls out to dysautonomia, “you can do it!” Dysautonomia awkwardly jumps, yet miraculously lands on its feet. Again, the speed of the rotations lessen. 

One by one, each courageous passenger jumps toward the helping hands and cheers of all those who have already made it to safety. And each time the leap is a bit easier as the carousel slows, eventually returning to its leisurely pace. A few stragglers jump off, only to jump back on. But they’ve learned their lesson and no one is there to stay. 

I spent most of my life feeling trapped inside a body that I didn’t understand, couldn’t control and was at odds with. I felt misunderstood and invisible by much of the medical community who merely didn’t understand the complex landscape of my conditions, and I had to become the expert of my own health. Knowing that so many of you struggle in this same way is what compelled me to write my book, Speranza: How Pain Became the Path to Hope—out in 3 weeks!! I share the knowledge that ultimately saved my life, and am so grateful for the many practitioners leading this research with compassion, advocacy and wisdom. Please share this post, as you never know whose life it might change❤️‍🩹❤️‍🩹