
In this issue of Community Experts, we delve into the story of Rowan Odom, whose life has been shaped by an undiagnosed chronic condition. Through Rowan’s candid reflections, we explore not only the personal impact of living without a diagnosis but also the systemic barriers that many face in the healthcare system, especially those with complex life circumstances. Rowan’s journey is a testament to resilience amidst uncertainty, shedding light on the broader public health implications of chronic illnesses, particularly those we ignore due to a lack of concrete answers, despite concrete consequences.
You can find Rowan on BlueSky at @rowantsp.bsky.social, where they share their experiences and work on Twin Strangers Productions, an audio drama company they co-founded. TSP is known for the hit sci-fi horror audio drama Syntax, alongside other productions and partner shows like The Moon Crown, Tell No Tales, Cryptid Counselor, and the upcoming Rites of Descendancy. All credit for this work goes to them, without which we’d not have had this opportunity to learn about an experience which way too many people live with, and far too few are actually listened to.
A Life Shaped by Illness
For Rowan, there was never a distinct “before” the illness—their condition has been a presence since birth:
“With my condition, I was born with it, so there was no life before! However, there are ebbs and flows, much like most chronic illnesses. I’ve found myself, on several occasions, forgetting that I have an illness at all, until something inevitably aggravates it or causes me to remember.”
This reflection captures the fluid nature of living with a chronic condition. It’s not always at the forefront, but its influence is ever-present, shaping experiences and daily life. The lack of a formal diagnosis adds another layer of complexity, intensifying the uncertainty and making it even more challenging to navigate personal health and the medical system.
Living with the Unknown
Rowan’s childhood was marked by severe health struggles related to metabolic dysfunction:
“My brother and I were not expected to live past the age of 3, as the metabolic issues we had resulted in an inability to process protein properly. We were extremely sick children, and often would have terrible problems resulting from colds or flu, some even nearly taking our lives.”
One particularly harrowing memory stands out:
“I recall, once, having such a strong virus that it completely destroyed my immune system, and I had to be treated like a ‘bubble-child’, only being visited by quarantined people. They said it was comparable to Leukemia.”
Despite surviving these life-threatening episodes and needing intensive care, Rowan’s path to an answer of what is actually going on has been anything but straightforward. At age 13, a visit to the Mayo Clinic hinted at a potential breakthrough:
“I was finally told I could be diagnosed—that they even had the technology and case studies to tell me what I had, with it being so incredibly rare and unseen in biologically female subjects.”
Unfortunately, Rowan did not get the chance to actually be tested properly, and adulthood has introduced new obstacles. Navigating the healthcare system without guidance proved daunting:
“[…] I have no idea what sort of thing to even start with.I have not been able to pursue a diagnosis myself in my adulthood. The health industry makes it so incredibly difficult to know what path you should begin to take to receive a diagnosis, and what steps just make you look like a fool.”
The Broader Picture: Undiagnosed Chronic Conditions
Rowan’s story is not unique. Millions of people live with chronic conditions and many conditions remain undiagnosed, particularly for those individuals not assigned male at birth. Studies suggest that these individuals often face longer diagnostic delays and higher rates of medical dismissal. This disparity highlights systemic biases within healthcare that contribute to prolonged suffering and inadequate care, especially in scenarios where a diagnosis is not straightforward or require extensive work.
Barriers Beyond the Illness
Rowan reflects on the additional challenges posed by family dynamics and misinformation:
“My mother is an anti-vaxxer, so a lot of the information regarding my allergies to drugs and medications might be falsified. I do believe that she intended the best for me, and it must be terrifying to have such a sick child, but I can’t help but wonder what would have happened if I wasn’t lied to into my adulthood.”
This uncertainty complicates their efforts to seek accurate medical history and appropriate care, as health care providers can treat individuals who are not completely informed about their current health status as dishonest, or as less capable than other adults. This is especially true if conditions have many distinct events or symptoms associated with it. This erosion of trust of a patient to be able to be an informed participant is a known phenomenon that can severely damage outcomes, while trust and cooperation with patients can be a large part of a successful treatment plan.
A Message to Healthcare Providers
Rowan has a clear message for medical professionals:
“I would love to not feel like I’m stupid for bringing up issues that I don’t know the name of! Being that I don’t have an official name for my illness, it’s so difficult to get people to think you’re serious and not just making up some story. If people were able to listen, and actually hear all of the weird things that have happened from this disease or to my body because of it, I think they’d be able to help me more adequately.”
Their plea underscores the importance of listening to patients, validating their experiences, and recognizing that not every condition fits neatly into a diagnostic box.
A Call to Public Health and Policy Makers
Rowan’s frustrations extend to public health systems and policymakers as well as physicians:
“Please listen to your patients, and remember why you took the Hippocratic oath. In this day and age, people my age are always worried about the financial costs when they should be thinking about their own health. Why do we need to worry about money when our lives are on the line?”
They advocate for policies that prioritize people over profit:
“If there are people who need help – whatever age, class, or any other myriad of constructs they see – we should be able to help them without worrying about finances or debt. Cancer patients should not have to be dying because of lack of care—same thing for anyone who has a chronic or acute disease.”
Empathy and Accessibility
Rowan emphasizes the need for greater societal empathy and accessibility:
“I would hope that people would try to be empathetic towards others, as you never know what they may be struggling with. There are so many things we could do to improve quality of life for everyone.”
Their reflections highlight the importance of accessibility features and accommodations for those with invisible disabilities, especially as awareness of conditions like Long COVID grows.
Final Thoughts
Rowan’s story is a powerful reminder of the human cost of medical uncertainty and apathy. Their experience calls for systemic changes in how we handle the unknown and complex, and societal attitudes toward chronic illness and disability.
“If your child or someone you’re directly involved with has a medical issue, it is so, so important that they know the honest details of it. Even if they’re too young to understand, it can be repeated, and that way they’re able to face their problems head-on without feeling like they’re falsifying their illness.”
Community Experts is honored to amplify Rowan’s voice, shedding light on the urgent need for a more compassionate, inclusive, and responsive healthcare system. If you or someone you know would like to share their story about disability, chronic disease, vaccine preventable disease, or anything else similar, please reach out to us on BlueSky or by email at Cody.Carmichael@Broadlyepi.com.
The featured image for this article is “Das Dunkel” by Karl Wiener (Austrian, 1901-1949). Primarily both a draftsman and graphic artist, which is impressive as he did not start his art career until he was 24 years old. His career ended when his Vienna studio was wholly destroyed by bombing raids in 1945, and he passed only a few years later after a long depressive period.