My Chronic Illness Journey
In 2023, I was hospitalized for three days after fainting twice in 24 hours, but they could not explain what was happening to me. In that same year, I started experiencing severe allergic reactions to so many foods that had never been a problem for me. The symptoms from those foods became more and more severe until they started affecting my ability to urinate during an episode due to intense swelling, and I felt as though I was dying from the inside out. Then, after an extremely dangerous emergency visit where I was dismissed even though I could not even urinate because that area was so swollen I could barely walk, covered in hives, dizzy, nauseous, with a migraine, I realized I needed to start documenting my health experiences and symptoms myself, and I felt completely unsafe in the care of the medical community. I left that emergency room being told I was just having anxiety, my symptoms were dismissed and I wasn't even examined. I felt completely hopeless. I began tracking my allergic reactions, fainting episodes, dizziness, symptoms, medications and other changes. What started as a few individual worksheets slowly became something much more important: a record of what was actually happening to me, a system to help the medical community help me.
Instead of telling my doctor, “I faint a lot,” I could show her exactly how many times it happened, when it happened, how long it lasted and how severe each episode was every month. Instead of trying to explain how much my health was affecting my life, I could show her how often I was in bed unable to move, how many foods I could no longer eat and, if I did, what those foods did to my body.
I could document how my food choices had become increasingly limited because I was becoming afraid of reactions, how I was losing weight, and how anemia and other health concerns were becoming part of the bigger picture. For the first time, I wasn't relying entirely on my memory or her fractured notes with scattered symptoms across years to tell my story. I had the information in front of me.
My Chronic Health Binder was born from my personal journey of navigating complex medical systems. After years of managing chronic conditions, debilitating symptoms and no answers, I realized that a dedicated, organized system was what I needed to take control of my health care. For years, I knew something wasn't right. I just didn't have the information to prove it. Like many people living with chronic illness, my medical history didn't begin with one clear diagnosis that explained everything. It came in pieces. A symptom here. A test there. A new diagnosis that was given a name but never really explained. Another prescription. Another appointment.
Another reassurance that everything was fine and far too often, I was told it was anxiety.
For more than 20 years, I was trying to understand what was happening with my heart, fainting, dizziness and other symptoms. I was repeatedly told that my heart was fine, only to later have one doctor tell me it looked enlarged. Another doctor diagnosed me with WPW after seeing a delta wave, but when I was sent to another cardiologist through the emergency department, that diagnosis was questioned and eventually taken away. When I returned to the original doctor, there was no further investigation.
Then there was my morphea diagnosis. I finally had a name for something that was happening to my body, but having a diagnosis didn't mean I understood it. There was little explanation of what it meant or what I was supposed to watch for next. I kept getting moved from one doctor to another, while the bigger picture remained scattered.
As I continued documenting my health, I was eventually diagnosed with MCAS and dysautonomia. More recently, Ehlers-Danlos has entered the conversation as another possible piece of my health journey. Living with complex chronic illness taught me how difficult it can be to keep track of everything. Medical records are in one place. Test results are somewhere else. Medications change. Symptoms overlap. Reactions happen unexpectedly. Important details are easy to forget by the time you sit down in a doctor's office, and when you're so overwhelmed, it can be difficult to communicate everything clearly.
And I wasn't the only person experiencing this. Friends began sharing their own health struggles with me. One friend regularly experienced joints popping out and had never considered that it might be something worth investigating. Another was experiencing food-related and environmental reactions and began tracking her symptoms. Seeing their experiences made me realize just how many people are trying to navigate complicated health problems without a clear way to organize the information they are collecting.
I realized that we needed more than another symptom checklist, spreadsheet or app to document symptoms. We needed a way to see the whole story. That's why I created My Chronic Health Binder. I took the worksheets I had originally created for myself and developed them into a complete chronic illness workbook designed to help organize your health information in one place.
I used the system I created for myself and then asked the chronic illness community for feedback, and what resulted was the My Chronic Illness Binder. It brings together the things that can become scattered over years of living with chronic illness: medical history, symptoms, medications, allergic and food reactions, appointments, test results, health patterns and questions for your healthcare providers, all in one place. It is especially designed with people living with MCAS, POTS, dysautonomia, Ehlers-Danlos and other complex chronic conditions in mind.
I know what it is like to sit in a doctor's office and try to explain a complicated medical history from memory in a 2-minute snapshot. I know what it feels like to be dismissed, overwhelmed, let down and frustrated when you know something is wrong but don't yet have the answers. And I know how different it feels when you can put your information in front of your doctor and say: “This is what has been happening, this many times, in this way, making my body feel like this,” vs. “I feel sick a lot.”
The My Chronic Health Binder isn't a replacement for medical care, and it doesn't diagnose or treat anything. It is a tool for documenting your health journey and helping you organize the information you already have. Because your health story is more than a diagnosis. It is a collection of symptoms, patterns, reactions, medical history and experiences.
