My Story

I’m Jess, the wife to one amazing guy, a stay-at-home-mom to four beautiful (and crazy!) children, a fur mom to two kitties, and I live what I think is a pretty normal suburban life; with one exception. I’ve been diagnosed with several diseases that have turned my life upside down, because while I look pretty normal on the outside, I’m definitely living an invisibly broken life on the inside.

As most kids are wont to do I had my fair share of injuries and illnesses as a child. It didn’t matter that my body was a bit more bendy then others, that things just popped out of place, and that I was more prone to allergies and illnesses. I thought not much of it because I learned from an early age to just power through. Then I hit college. I continued to sustain injuries, one of which ended my dream of playing collegiate soccer, and I accrued sicknesses like I needed them for my resume. I attributed it to the fact that I was around kids all the time as an elementary education major but when three major flu bugs laid me up in just one semester (including the Swine Flu) and I had such crippling fatigue that it was recommended I be tested for Mono (even though I hadn’t been exposed), I had to admit to myself that there was something a bit more “off” with my body then with most others. By this point I had already been diagnosed with Restless Leg Syndrome and Fibromyalgia as well as having sustained several concussions due to sports. Although I went searching in the medical community for answers none were to be had so I continued to do what I always did, power through.

A decade later I seemingly turned from a relatively healthy late twenties-something into a practically bed-bound early thirties-something. From 2018 through 2021 I experienced a period of cognitive and physical decline that made it seem as if I had fallen off a health cliff. During those few years my physical decline became so bad that on some days I could barely get out of bed and I had to stop nearly all my activities. Having been an athlete and active all my life this was mentally and emotionally devastating to me.

Although I had talked to doctors on and off about my varying symptoms throughout the years of my life (ranging from migraines, widespread joint/muscle pain, mood swings, memory problems, reproductive issues, and a whole host of other problems) nothing ever really changed. In 2020, however, I earnestly began searching for answers because the way I was living life was not living at all. I bounced around for months searching for answers and was dismissed time and time again because my symptoms were too disconnected, or too mental/neurological in nature, or too specialized, or too fill-in-the-blank. It was emotionally and mentally draining going around and around the medical system to professionals who were supposed to help me and were at best sympathetic but unable to help, or at worst completely dismissive. I began to question and doubt myself wondering if indeed this was normal and was just how life was supposed to be. Cue my dad.

My dad is a retired physician turned hospital administrator and after hearing me sob and rant after yet another failed doctor’s visit he asked me to write up all my symptoms, presumed causes/events, interventions, diagnoses, medications, etc. and he would take a look at it as well as pass it along to some of his colleagues (he was Chief Medical Officer at a hospital system in Western NY at the time). He called me back the next day and it was his diagnosis of a Traumatic Brain Injury that finally set me on the right path.

I found a long-term post concussion care specialist who within ten minutes of meeting me agreed with my father’s long-distance diagnosis, and after a myriad of tests gave me an individualized plan of healing. In 2021 I was diagnosed with Persistent Post Concussion Syndrome from a series of concussions that I sustained in my youth culminating with a car accident in 2018. Although I sustained my worst concussion in 2010 due to a skiing accident, I managed to flounder along and it wasn’t until a car accident in 2018 that the straw finally broke the camel’s back. This doctor also referred me to another physician in his practice to help with my whiplash injuries and it was that sports physician who, coincidentally, was conducting studies on patients with Hypermobile Ehlers-Danlos Syndrome (hEDS) and recognized the symptoms within me. The unaddressed mTBIs along with the stressors and hormonal changes of my last two pregnancies (including a miscarriage), had cascaded my underlying genetic disease of hEDS. I was referred to a hEDS/POTS (Postural Orthostatic Tachycardia) specialist who diagnosed me with the “evil triad” of hEDS which also includes Mast Cell Activation Syndrome (MCAS) and POTS; two more diagnoses that explain so much of my life.

After months and months of searching I finally had answers and a path forward. I have since started a myriad of treatments for my diagnoses, some of which of been helpful, some of which have not, but all of which I’ve been grateful for because each represents a step forward in my life that had previously been at a standstill.

After living in pain with inexplicable symptoms for most of my life and thinking that it was “normal,” I have begun to realize that everything I thought was normal was wrong. A whole new world has begun to open up to me, and along with that a path for healing – for my body, mind, and soul.

My hope and prayer is that somehow my story can help someone who is struggling to find the right path as I once was. I may be living life invisibly broken on a road that is long and likely unending, but I will continue to walk forward, one step at a time.