Chronic Inflammatory Response Syndrome: An Unnecessarily Arduous Journey to A Rare Diagnosis

A patient, a blonde white woman wearing a dark top with a white top underneath, holds her head in pain while a fair-skinned doctor, face unseen, holds a clipboard while wearing a white lab coat with a stethoscope around their neck.

As I sat in the waiting room of my doctor’s office, a wave of hopelessness washed over me. It was my fourth visit that month; I was beginning to feel desperate and invisible. I’d been experiencing strange symptoms for months—fainting spells, headaches, vertigo, flu-like symptoms, and excessive thirst—and none of the doctors I’d seen could give me a concrete answer.

At the time, I was working at a startup in Baltimore. I chalked it up to too much coffee and too little sleep. Over time, the symptoms got progressively worse. I would go to work having pounded ibuprofen, coffee, and anxiety medication. Because I presented as “normal,” any time that I mentioned needing to rest or take some time to look after my health, everyone from doctors to friends either directly or indirectly told me that I was simply bad at stress management and everything was all in my head.

I felt hopeless. My symptoms were impacting my ability to work and enjoy life, but no one seemed to take me seriously. Doctors would do blood work, note that it all came back normal, and say “Let’s see if things have improved in six months” without prescribing me anything except for occasional nausea or anxiety meds.

Eventually, I quit my stressful startup job, thinking that perhaps my symptoms would go away if I could achieve a better work-life balance. Spoiler alert: they did not. As time went on, I started developing sensitivities to many of my favorite foods and drinks. After eating them, my light-headedness and excessive thirst would increase significantly. I began tracking both my food intake and my symptoms and, after finding a near-perfect correlation between fainting and three different foods and beverages, I went to an allergist. She promptly told me that I’d made it all up and needed to work on my food phobias.

I had to quit two more jobs due to how much my symptoms impacted my ability to work. Last year, things crescendoed. My excessive thirst led me to drink so much water that I was hospitalized for hyponatremia (low blood sodium) and my vertigo and headaches became unbearable. I also began to experience overwhelming brain fog that prevented me from getting anything done or learning anything of substance while working.

After ruling out diabetes, my doctors simply told me to drink less water; the thirst was probably all in my head. I spent hours each day on the phone calling specialist after specialist asking them to see me, following up on test results, having my medical records sent to other facilities, and handling all of the other logistics of seeking treatment for my unidentified illness. I also began diligently documenting every aspect of my daily life. This comprehensive log—detailing what I ate, drank, did, and the symptoms I experienced—became crucial. Before each doctor’s visit, I’d analyze and share key highlights from the data to ensure that I wouldn’t waste time rehashing old details and to preemptively address any simplistic theories they might want to revisit.

I had all but given up when I stumbled upon a health podcast in which the host is told by a specialist that she is demonstrating hallmark symptoms of Chronic Inflammatory Response Syndrome (CIRS). She was the first non-diabetic person who I’d heard mention that she experienced excessive thirst as a symptom and her other symptoms matched mine almost completely. Excitedly, I began googling the condition to learn more, despite having been told over and over by well-meaning but misguided friends, medical care providers, and family that I should avoid self-diagnosing or reading too much about illnesses online. I was tired of letting the “experts” mishandle my health and my life.

I learned that CIRS is a chronic condition that causes inflammation in the brain and can eventually lead to other autoimmune diseases and neurodegenerative disorders. It often develops when someone who is genetically susceptible to the types of molds and bacteria that are prevalent in water-damaged buildings gets exposed to those pathogens. Because CIRS patients are unable to handle that exposure the way that the rest of the population can, they get sicker and sicker unless they get treatment.

Common CIRS symptoms include flu-like symptoms, headaches, brain fog, blurry vision, light-headedness, excessive thirst, and weight gain. If left untreated, the brain gets so inflamed that many begin to experience dementia-like symptoms. Additionally, CIRS can even cause or exacerbate pre-existing anxiety.

I found a specialist who works with Dr. Andrew Heyman, a leading researcher on CIRS. After several weeks of extensive blood work, brain scans, and other testing, the diagnosis was official: I had CIRS. Knowing how serious CIRS is, I am glad that I listened to my gut. I only wish that I had been more insistent that it wasn’t just in my head so that I could’ve received a diagnosis sooner.

Looking back, I realized that my experience is not unique. Disabled individuals often struggle to have our symptoms taken seriously by the medical community. I had to fight for years to get the proper diagnosis and treatment and it was only because I stumbled upon a podcast that I finally found some answers. According to studies by Dr. Heyman, over 20% of the population is genetically susceptible to the disease, although the gene has to be activated by a precipitating event for the individual to develop CIRS. I wonder how many people are silently suffering with the disease that I am now being treated for.

The struggles that disabled individuals face extend beyond the medical community. We also face discrimination in the workplace and in our everyday lives. As someone who experienced CIRS as a result of a water-damaged work and home environment, I feel that it’s important to speak out about workplace and tenant rights and safety as they relate to disabilities.

The repeated dismissals I faced aren’t merely personal grievances; they expose a systemic failing. People with disabilities, chronic illnesses, and other serious medical conditions shouldn’t have to sit on waitlists and fight to be taken seriously when they finally do get to see a doctor. As infuriating as my experience was, my education and majority ethnic identity made it easier for me to rebut doctors’ dismissals, flooding them with data, carefully reasoned arguments, and ultimately demands to be treated better.

A system that prioritizes only those who can advocate for themselves creates barriers for the less privileged and for those with intersecting marginalized identities. Whether inadvertent or by design, the way that the healthcare system works today falls short of respecting human dignity, to the detriment of society. Every individual deserves a voice, care, and understanding. We need more than hope. We need actionable change that ensures every person’s health and well-being is genuinely prioritized.

Mia Tompson (she/her) is a graduate student with a chronic illness. She lives in Boston, and when she is not studying or working, she enjoys baking, photography, and swimming.