Invisible Not Broken - Chronic Illness Podcast Network

Hidden in Plain Sight

The Life of a Secret Spoonie: Part One: Introduction

Hello everyone and welcome to Hidden in Plain Sight. This will be a monthly column about the trials and tribulations of living life with invisible illnesses that (most) people don’t know about. I am not entirely closeted, as some of my friends and family know about my medical conditions, but for the most part I live my life in a state of semi-secret. I have the utmost respect for those who live in the spotlight; who bravely wear their illness on their sleeves. There are times when I wish I could step into the light with them. But that’s just not me, not right now; maybe not ever. I hope that what I write here will resonate with some of you who might be in a similar position.

Let me introduce myself. I’m a secret spoonie: a (somewhat) closeted chronically ill person. I’ve been struggling with various invisible illnesses for the past thirty-five years, but only some people in my life know about what I’ve been though; what I still go through. I have been hiding in plain sight, for better or for worse, through sickness and in health, for more than three decades. Mostly: sickness. If anyone outright asks, in person, I will tell them the truth about my medical conditions, but I only discuss it in any depth with close friends and family. I will also (very occasionally) post something (very vague) on social media, but that is a rare, and often cryptic occurrence.

My story begins when I was a teenager. At the onset of puberty, I began to suffer severe cramping and abdominal pain, magnitudes greater than that of my peers. Thankfully, I had a mother who was both sensitive to my behavior and also highly aware of women’s health issues. She was also proactive, and took me to a Gynecologist who specialized in pain when I was fourteen. By that point, I had been suffering for about two years, mostly in silence. The doctor examined me and gave me two prescriptions: eight hundred milligram ibuprofen for pain, and chloral hydrate (otherwise known as “knockout drops”) to take during those nights when the pain prevented me from sleeping. I continued like this for another five years: suffer, medicate, suffer, medicate, rinse, repeat…

At nineteen, I started having more extreme symptoms, so I went to another doctor in the same practice who was also a surgeon. This time I lucked out: she happened to be one of the most prominent pelvic pain specialists in my area. She diagnosed me with “suspected endometriosis,” since a true diagnoses requires exploratory surgery. Two years later I had that surgery, a few days after my twenty-second birthday. The diagnosis: Stage Two Endometriosis. Photographs taken during my first surgery showed that the disease had been covering multiple organs in my abdomen. The excised what they could, sewed me up, and gave me some more, stronger prescriptions.

Thus began my journey of living life with invisible illness. Over the last twenty-eight years, I have had eleven major surgeries, and a handful of minor ones. I have had dozens of other (often invasive) medical procedures, and been hospitalized for weeks at time. I’ve had three organs removed, along with some of my spine. I have stitches in my skin and screws in my bones. There is a metal plate and cage implanted in my neck. I have been formally diagnosed with Spinal Stenosis, Fibromyalgia, Ankylosing Spondylitis, Peripheral Neuropathy, Raynaud’s Syndrome, and Stage Four Endometriosis. Throughout my life so far, I have done many things that a “normal” person does: I went to College, earned three degrees, bought a home, got a job, made some friends, lost some loved ones, got a career, got married, and discovered the meaning of life (just kidding on that last one), not necessarily in that order. I can only describe how I feel as like being naked and overdressed at the same time; always: both exposed and covered up. If there’s anything I’ve learned about dealing with my illnesses, it’s that there is no one way to deal with having a chronic illness (or six) and that, as sappy as it sounds, I’m still surprisingly grateful for everything I have and for everything I don’t. If you’re at all like me, you’ll probably understand the meaning of that last one.

Take care for now and hopefully I’ll see you again soon.

Secret Spoonie

If you have any comments or questions, or something you would like to see covered in a future column, please feel free to contact me at: secretspoonie@gmail.com

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