Self-Advocacy Q&A with Jodie Cenci
Jodie Cenci
"I am motivated to continue to disclose and advocate because I know that I had to build that muscle young and a lot of people living with an invisible condition may be new to the medical problems that have underscored my whole life."
An interview highlighting the challenges and misunderstandings that come with living with fibromyalgia. Stressing the importance of speaking up for yourself, teaching others, and building a supportive community to raise awareness about our conditions.
Tell us a bit about yourself, your diagnosis journey and the invisible condition/s you are living with.
Hi, I’m Jodie, I live in San Diego, CA, and I live with multiple invisible conditions, including most recently and most significantly, fibromyalgia.
I was a bit of a medical anomaly as a kid, and I was diagnosed with a genetic disorder (Trichorhinophalangeal Syndrome (TRPS) Type 1) after being poked and prodded for a few years to try to connect the dots of all of my “uniquenesses”, as my mom liked to call them. Crooked fingers, weird toes, sparse hair, an extra middle tooth - all of a sudden, these were signs and symptoms of a diagnosis, not my own little quirks. I was 11, and instead of feeling proud to be a little different, I now felt defective.
Soon after, my legs bowed dramatically outward, and I had eight major surgeries during middle/high school to correct (re: break) my legs, fix the arm I busted tripping over those legs, and repair the carpal tunnel that followed so many months using a wheelchair and crutches. I became intimately familiar with pain well before I could even drive.
Fast forward to last summer. I was in pain again, and this pain seemed to increase day over day. I thought this was the inevitable arthritis from having misshapen joints. As I was in the “googling ‘what doctor for arthritis everywhere’” stage of my pain, it burst past my joints into my whole body, and I soon figured out what a rheumatologist would ultimately conclude: I have fibromyalgia.
Fibromyalgia is a diagnosis of exclusion, meaning there isn’t a confirmatory test(s) that definitively shows it (which unfortunately leads to misdiagnoses and misperceptions). The rheumatologist checked my pain levels at certain points on my body (check) and ordered blood work to rule out other things (check, check), but my symptoms were so spot-on, that it was no surprise when I “officially” received my diagnosis the next week, via a write-up submitted through my patient portal. How personal. Her recommendations were to join a support group and try yoga. I knew I’d be on my own learning about this incredibly complicated condition, how to manage it, and how to try to live a somewhat normal life despite it.
How would your friends describe you and your personality?
Ever since I was young, I’ve found joy in marching to my own beat, which has always included finding ways to make friends laugh. For better or worse, I honed this skill as a way of deflecting pain, both physical and emotional. Some of my friends know the deflection tactic better than others, but they would all describe me as funny.
Just as I’ve fine-tuned my ability to make friends laugh, I’ve also tuned the “march to my own drum” mantra to look a bit more like “run your own race”. Each would likely describe how this looks in our relationship in different ways, but I think that theme would be there.
I’m also a huge, sappy empath. While they may not use those words, they would describe me as kind and open-minded, with a huge heart for the underdog.
“There is never a moment where the question is whether I am in pain, it is always a matter of how much, and what type(s) of pain.”
How has the invisible condition impacted your life?
In fibromyalgia, your nervous system gets stuck in “fight or flight” mode. This is really helpful if you’re being chased by lions, but it creates a mess when activated long-term. It causes a chain reaction that interferes with sleep and digestion and causes unthinkable fatigue, debilitating brain fog, and eventually, severe pain (coupled with increased TRPS joint pain now). There is never a moment where the question is whether I am in pain, it is always a matter of how much, and what type(s) of pain.
The biggest change though was learning - and learning to live within the bounds of - spoon theory. This idea that you have a finite amount of energy that needs to last all day, and every single action or interaction draws from your spoon count. Constant “fight or flight” mode is an incredibly inefficient way for the body to operate - think trying to sprint through a marathon. I no longer have another gear that I can push into, even if I want to. Resting does not restore spoons, it merely stops the bleed. My only hope for more spoons is a good night’s sleep, which is tough to get with fibromyalgia’s distinct sleep disturbances.
Please share any experiences of stigma or discrimination that you have experienced due to your condition.
Since my childhood conditions were largely visible, I was teased a lot (I remember it from as early as six or seven). I was always the “other”, and that only increased as I entered middle school in a cast and proceeded to have surgery after surgery for the rest of my childhood.
I have been shocked to learn just how stigmatized fibromyalgia is. I can bring witnesses and receipts as to how bad the pain is (I’ve had 18 surgeries, so I know pain). And yet people think we make this up, or that our dramatically reduced activity level is due to laziness. These are people who need to read up on spoon theory. I am fortunate to have enough people in my life who are firmly in my corner, so I can put up blinders most of the time to others’ ignorance, but it hurts to know how much is out there.
What does self-advocacy mean and how have you managed to advocate for yourself? Any advice to share?
Right now, self-advocacy means and looks like small moments of education. I have been learning as much as I can about the neuroscience of trauma and of fibromyalgia (the vast majority of patients with fibromyalgia have experienced trauma, primarily childhood trauma, which kicks the nervous system into overdrive). This helps me to speak in a frank way about my diagnoses of both fibromyalgia and PTSD and to help people understand the very real, physical changes that result from undiagnosed, untreated childhood trauma, mine in the form of all of those surgeries and “othering”.
Not only do I want to do my little part in reducing the stigma associated with both PTSD and fibromyalgia, I also want to shine some light on the impact of toxic stress and childhood trauma, especially when it occurs in corners you wouldn’t normally check. It doesn’t always show up the way it is portrayed on the screen. If you take my medical problems out of the equation, I had a great childhood. That doesn’t change the fact I did have those medical problems, and they did affect me - in fact, it literally rewired my brain.
What motivates you to disclose your disability despite the courage it requires?
My experience with disclosure started young, with highly visible conditions that required highly visible treatment. For my own survival, I had to learn to be at least marginally comfortable in that skin, where everyone could see what was going on in my medical journey in real-time. I ultimately leaned into it, using school projects to educate my classmates on my surgeries and TRPS.
I am motivated to continue to disclose and advocate because I know that I had to build that muscle young and a lot of people living with an invisible condition may be new to the medical problems that have underscored my whole life. In a strange way, I know I have that privilege, the privilege of experience.
I also have great privilege in my profession to enact real change, and that is incredibly motivating to me. I work in HR, so I get to develop internal policies that are inclusive to those of us with disabilities and invisible conditions, I also participate in professional groups and have done a few speaking moments with and for other HR folks to whom I can advocate for disability inclusion. Not only that, I work for a company that has inclusion as one of its brand promises. Primary.com blew me away back during my interview prep when I saw a kid with crutches modelling clothes on their homepage (you can imagine what that did for the kid still in my heart!). I got to use my experience with developing and navigating fibromyalgia to bring in Disclo to make the disclosure and accommodation process far less scary for the team, to start an all-inclusive ERG/affinity group, and to work to implement training and process improvements to support candidates and employees with disabilities and neurodivergence.
What encouragement would you offer to someone living with an invisible condition who is considering whether to openly share their journey and experiences?
Start small, and in a way that is comfortable for you. Advocacy does not need to look like big gestures in front of cameras or large groups. It absolutely can look like that, if that is your wheelhouse. For me, I realized that my HR hat was the key to unlocking my advocacy door.
For others, it could be getting involved with a disability-focused nonprofit. And for others still, it will be small posts on social media. There are enough advocacy niches for us to all be involved in our own ways.
Bio: Jodie Cenci is the Director of HR for Primary, a kids clothing brand built on inclusivity. She lives in San Diego, CA, where she moved after 30 years on the East Coast to pursue her dream of living snow-free. She enjoys the sunshine, word games, cooking competition shows, and playing couch game show contestants with her partner, Ian.
LinkedIn: Jodie Cenci