Why Ticked Off Codess? | A Chronic Illness Advocacy Blog by Carol

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Hello, I’m Carol, and I’m a ‘Ticked Off Codess.’ This chronic illness advocacy blog was born from years of frustration, resilience, and a refusal to stay silent. In this post, I’ll delve into what it means to be a ‘Codess’ and why I’ve got every reason to be ticked off.

The Short Version: I'm Carol — a software engineer living with Lyme disease, ME/CFS, MCAS, and Long COVID. After years of medical dismissal, misdiagnosis, and fighting to be heard, I channeled my frustration into this chronic illness advocacy blog. Ticked Off Codess is where I share real treatment protocols, adaptive living strategies, and the unfiltered truth about navigating life with multiple complex chronic illnesses. If the medical system has ever failed you, you're in the right place.

As someone who has struggled with chronic illness most of her life, I’ve had to fight for my health in more ways than most can understand. I was raised to believe in equality and perfection. Yet, I was always treated differently because of my gender. Any disappointment was not acceptable and often met with anger from my parents.

As a teenager, I had a lot of pent-up and residual anger but no tools for releasing it. As health issues popped up, I began looking inward. It wasn’t until I realized that I was not to blame for my health issues that the pent-up anger transformed into indignation.

I became ticked off. Ticked off at my circumstances, and ticked off at the world.

As time passed, I came to a crucial realization: I had a choice to make. I could either allow this anger to fester and consume me, or I could harness it as fuel to propel myself forward, chasing my most cherished dreams. Without hesitation, I chose to let it fuel my determination.

That determination led to a significant achievement – a full 4-year scholarship that allowed me to venture as far as possible from my current situation, all in pursuit of the person I aspired to become.

As my health continued to take a toll on me, I found myself feeling lost and uncertain about the future. Yet, I clung fiercely to the hope that one day, things would get better.

Even in the face of that hope, I couldn’t shake the feelings of indignation, annoyance, and frustration that still simmered within me. Those feelings are exactly why I started this chronic illness advocacy blog — to channel that frustration into something that could help others.

What This Chronic Illness Advocacy Blog Is Fighting For

The truth is, the systems that are supposed to protect and heal us are broken. Chronic illness patients — especially women, people of color, and those with complex multi-system conditions — face medical dismissal, financial devastation, and institutional indifference at every turn. Conditions like ME/CFS and Long COVID still have no approved treatments, despite affecting millions. Tick-borne infections continue to be underreported and undertreated. And too many of us are left to navigate this nightmare alone, emptying our savings for specialists while being told our symptoms are all in our heads.

So yes, I’m ticked off. Here’s why:

• I’m ticked off at how the medical system failed me for years.

• I’m ticked off by the systemic injustices ingrained in our medical system, leaving countless individuals, especially those dealing with tick-borne infections, to fend for themselves.
• I’m ticked off that Lyme disease remains one of the fastest-growing infectious diseases in the country, yet the CDC continues to underestimate its prevalence and the medical community still debates whether chronic Lyme even exists.
• I’m ticked off by how swiftly medical professionals dismiss our symptoms as mere figments of our imagination, leaving us struggling in silence.
• I’m ticked off at how I’ve lost my voice so many times to dismissive doctors.
• I’m ticked off that I have to dig deep into my own pockets to seek help from specialists in tick-borne infections, while the healthcare system should have our backs.
• I’m ticked off that I’ve had to fight tooth and nail just to be seen and heard by doctors.
• I’m ticked off that my significant other and I were denied COVID-19 testing early in the pandemic because we hadn’t traveled to China — a failure that reflected the systemic gatekeeping chronic illness patients face every day.
• I’m ticked off that because of my gender, my symptoms were not taken seriously.
• I’m ticked off that my ethnicity has led to unwarranted doubt and dismissal of my health concerns, an experience far too familiar for many people of color.
• I’m ticked off that there’s such a massive disconnection between what my mind wants to do and what my body allows me to do.
• I’m ticked off that Long COVID affects millions worldwide yet continues to be met with indifference — research funding has been cut, public awareness has faded, and those still suffering have been quietly erased from the conversation.
• I’m ticked off that the pandemic was declared “over” while millions of us are still living with its aftermath — abandoned by a society that moved on without us.
• I’m ticked off that I’m being left behind.
• I’m ticked off that my career is on pause.
• I’m ticked off that recovery is so damn slow.
• I’m ticked off that I keep accumulating diagnoses.
• I’m ticked off that marginalized communities face relentless hurdles in obtaining proper diagnosis and treatment for ME/CFS.
• I’m ticked off that, to this day, there are absolutely no approved treatments for ME/CFS and Long Covid, leaving countless individuals without effective solutions for their suffering.
• I’m ticked off that disability accommodations are still treated as special favors rather than basic rights, and that chronically ill people have to justify their existence to access them.
• I’m ticked off that the chronic illness community continues to lose research funding and institutional support just as we were beginning to be taken seriously.
• I’m ticked off that “invisible illness” still means “not believed” in most doctor’s offices.

But here’s the thing about being ticked off — it doesn’t have to destroy you. At some point, I realized that my anger wasn’t the enemy. It was fuel. The same fire that made me want to scream into the void also made me want to build something. Something real, something useful, something that could make even one person feel less alone in this fight. That’s how Ticked Off Codess was born — not from defeat, but from defiance.

The Coder and the Goddess Behind This Chronic Illness Advocacy Blog

The term ‘Codess‘ is an amalgamation of ‘Coder‘ and ‘Goddess.’

I’m inherently a coder and a scientist at heart, a software engineer by profession 👩‍💻. I relish tackling intricate problems, getting to the root of issues, and dreaming of converting my life into an algorithm that I myself must decipher. As a coder, my aspiration is to serve as an inspiration to more women and girls, encouraging them to embrace coding and pursue their passions in the tech world. I firmly believe that coding is a potent tool for fostering creativity, solving problems, and empowering individuals.

But there’s another facet of me, an inner goddess warrior yearning for recognition. This softer side of my personality deserves more self-reflection and love, a part of me I’ve often suppressed by bottling up my emotions. It’s the side I learned to conceal from the world at an early age.

My inner goddess deserves self-care. I’ve long neglected her, being overly critical and harsh on myself throughout my life. However, I’ve come to realize that through practices like meditation, journaling, and the simple act of diffusing my favorite essential oils, I can extend the love and compassion she craves.

I’ve learned that self-love starts from within, a journey where I no longer blame myself when things don’t go as planned or dwell on what I could have done differently, especially regarding my health challenges.

It also means embracing my true self, shedding the mask I’ve worn for years, and openly sharing my experiences. For far too long, I concealed my pain and struggles, silently bearing the burden alone.

While I’m a work in progress, I’ve come to understand that I cannot be defined solely by my career. This is precisely why I’ve combined ‘Coder’ with ‘Goddess.’

I am a ‘Codess’ because I owe it to myself to pursue my passion while nurturing my inner goddess. And this chronic illness advocacy blog is where those two sides of me meet — the coder who wants to solve problems and the goddess who refuses to suffer in silence.

Ticked Off Codess isn’t just a name — it’s a chronic illness advocacy blog built on lived experience, real protocols, and the belief that no one should have to navigate this journey alone.

Now that you know why I’m the Ticked Off Codess, dive into my blog where I share real treatment protocols, adaptive living strategies, and hard-won lessons from navigating life with multiple chronic illnesses. Start with my MCAS Kitchen Sink Protocol or explore my Rolling PEM series.