I had to navigate a healthcare system that wasn’t built for me

Caleb from the United States first experienced symptoms at the age five, but it took twenty years of misdiagnoses before he was finally diagnosed with MS. He describes how systemic healthcare barriers, including socioeconomic and racial inequalities, limited access to quality care and delayed his diagnosis for years. Now eight years on, he is living with MS on his own terms, supported by a healthcare team he trusts.

For most people, a diagnosis is a beginning. For me, it was a hard-won destination at the end of a twenty-year trek through a healthcare system that simply wasn’t built to see me. This month marks my eighth anniversary of finally knowing the truth about my body: eight years of clarity after two decades of being silenced and ignored.

​My symptoms actually started when I was only five years old. While other kids were playing, I was already navigating a body that felt increasingly “off.” By the time I was ten, the medical world put me in a box they thought I fit into: juvenile arthritis. They added on a diagnosis of fibromyalgia at seventeen and told me it was full blown arthritis. It was a label that never quite explained my reality, but it was the only one I was offered for nearly fifteen years.

​As I grew older, I realized my health wasn’t just a matter of biology; it was a matter of geography and advocacy. To get the answers I deserved, I had to strategically navigate a system riddled with systemic bias. I made the conscious choice to move to a wealthier area, knowing that quality care is often unfairly concentrated in affluent neighbourhoods. I also made the financial sacrifice to pay for more expensive private insurance. I knew, from seeing it happen to so many others in my community, that being on Medicaid often comes with an invisible tax of lowered expectations and dismissed concerns.

​The most important step, however, was finding a Black neurologist. I needed a doctor who wouldn’t just look at my charts, but who would see my humanity. I needed someone who understood the nuances of my experience and would treat me with the basic dignity I’d been denied for years.

​When I was 24, the “arthritis and fibro” story I’d been told my whole life finally shattered. An MRI revealed the truth: I had over 28 lesions scarring my central nervous system, stretching all the way down to my thoracic spine. Seeing those spots on the screen brought a wave of both validation and grief. It confirmed that I wasn’t being dramatic. I was a person living with aggressive Multiple Sclerosis that had been allowed to roam unchecked in my system since I was a child.

​Now, eight years into this journey, I’m on my third disease-modifying therapy. To be honest, I’m never “stable” in the way doctors might want me to be, but I finally have something I lacked for twenty years: a team. I have a medical support system that listens when I speak and acts when I’m hurting.

​I am incredibly grateful for the doctor who finally stepped up to take care of me. My journey from a misdiagnosed five-year-old to a man marking eight years of truth has taught me that you often have to fight for the right to be treated like a human being. I’m still in transition and I’m still fighting, but eight years later, I’m finally doing it on my own terms.

Our thanks to Caleb for sharing his MS diagnosis story on the World MS Day map. If you have an MS diagnosis story to share you can add your experience to the World MS Day map.