I was misdiagnosed for decades. This is my story.

When I’ve been sick – which has been most of my life – my dance card has been filled with all sorts of people trying to restore me to functional health. While I’ve logged plenty of time with those in white coats and scrubs in doctor’s offices and hospital emergency rooms, I’ve discovered that I am surrounded with all sorts of well-meaning people offering sure-fire remedies including various dietary restrictions, homeopathic treatments, nutritional supplements, allergist recommendations, vitamins, tinctures and teas, essential oil recommendations, and spiritual/emotional analysis. Though not a single one of their suggested treatments made a dent in my physical condition, eventually I came to recognize in most of their efforts that I’d been blessed by God with kind people who cared about what happened to me.  

Though I had perhaps maybe more than the usual amount of illness when I was a kid, from the time I was in my early twenties, I spent 6-8 months a year on one round of antibiotics after another for upper respiratory, sinus, pneumonia and/or ear infections. Occasionally a doctor would send me for either a battery of allergy tests or a visit with an ear, nose, and throat specialist. Those visits never netted any reasons for my seemingly endless string of illnesses. I would ask my various internists over the years, “Why am I always sick?”

Most would shrug and write me yet another prescription for stronger and stronger varieties of antibiotics. “Some people are just prone to catch whatever is going around.”

On the other hand, over the years, various ad hoc amateur medical practitioners in the form of friends and acquaintances at church seemed sure that they had the key to my health. I was desperate to do what I could to bolster my ability to fight off these infections, so I tried just about everything they suggested.

Nothing worked.

I was left with a lingering, low-lying sense of shame after every failure and round of illness. There must be something broken within me, I’d think. Maybe I was just weak-willed. Maybe I was harboring sin. Maybe I just hadn’t yet found the right secret sauce at the health food store. Why couldn’t I simply kick a simple cold like other people did?

Anyone with a chronic illness who has been misdiagnosed and/or told “it is all in your head” will recognize some form of this clumsy and sometimes-dangerous dance between an ailing body, well-intentioned friends who simply want to help, and a medical community that has lots of expensive diagnostic tools and healing potions at the ready.

Four years ago, I was on a second round of powerful antibiotics for a case of bronchitis and sinusitis when I got pneumonia. My internist sent me to a pulmonologist, who took one look at my long, sad medical history and ordered some different tests. I wrote in 2016

The specialist took one look at my medical history and began asking me questions I’d never been asked before, like, “Could you have AIDS?” and “Is there a history of Cystic Fibrosis in your family?” (No to both.) He ordered a series of blood tests no doctor had ever thought to do before, and the results showed I’m missing some essential components of my immune system. The name of this disorder is Common Variable Immune Deficiency (CVID).

Common Variable Immune Deficiency is a bit of a misnomer, as it is a rare condition, though it is the most “common” of the grouping of rare immunodeficiencies. Some estimate that it occurs in one out of every 25,000 to 50,000 people. CVID is not an auto-immune condition like lupus, multiple sclerosis, Graves’ disease, or Type 1 diabetes, though some in the immunodeficient community also battle autoimmune conditions because their immune system can be missing some components while other parts war with the body.  

The condition is often genetic in origin (which I learned this summer is indeed the case for me) but can also occur after some forms of chemo or other life-threatening illness. Most internists will never see a case of it in the course of their medical career. I learned that for doctors, the common wisdom can be summed up in the saw, “When you hear hoofbeats, look for horses.” In other words, focus on the obvious causes of illness when a patient comes looking for help. People with rare conditions like mine aren’t horses. They’re zebras.  

One of the saddest moments in my diagnosis of this condition four years ago came when the pulmonologist was explaining the results of those blood tests to me. He referred to my thick medical file and said, “They should have caught this 20 years ago. It would have saved you so much suffering.”

My suffering is different now. Treatment is very, very expensive and invasive and can’t replace everything that is missing from my immune system. I don’t have any first-line defenses against infections, though the weekly subcutaneous infusions of immunoglobulin G I pump into my abdomen or thighs has helped my body fight off infections when I contract them. Dealing with insurance companies and medical providers now takes up hours of free time each year and brings with it new financial anxieties. Flu season and word of new viral outbreaks like the recent spread of coronavirus carry real fear for people like me with dysfunctional immune systems. Like the elderly, young, and those who are medically fragile, we immunodeficient zebras are exceptionally vulnerable.

Finally having a diagnosis beyond “Gosh, you catch everything” has changed the way I interact with all my doctors. I’ve learned to show up at every medical appointment with a one-page sheet I’ve created that contains a list of my current medications, my diagnosis with my initial lab numbers, a brief medical and surgical history, and names and phone numbers of all my recent doctors. I see an immunologist at a teaching hospital, and she asked me if she could share the one-sheet with her medical students as an example of a way a patient can advocate for themselves in an office visit. I’ve learned to ask questions, say “no” to a few unnecessary tests, and fight for myself.

Having a diagnosis has also changed the way I interact with those well-meaning friends and acquaintances who attempt to offer me their remedies. I express gratitude for their expressions of concern, let them know that I have literally tried just about everything over the span of the years I went without a proper diagnosis, and suggest that the best ways they can help me now that I know what is wrong with me is to pray for me for strength, health, and financial provision, take proper precautions around me if they’ve been sick or been around someone who is, and consider getting a flu shot, as I depend on the immunities of those around me. (Vaccines don’t work on those of us without functioning immune systems.)  

When I turned 60 in July, my diagnosis altered how I faced that big odometer rollover in my life. 40 and 50 were rough for me as I mourned the losses and changes in my life. I still limp with the lopsided gait that comes from carrying grief for a long, long time. But at 60, I recognized that God alone has preserved my life. He has used doctors, drugs, and the care of friends alike to carry me here.

I know that my redeemer lives, and that in the end he will stand on the earth.And after my skin has been destroyed, yetin[my flesh I will see God; I myself will see him with my own eyes—I, and not another. How my heart yearns within me! (Job 19:25-27)

Cover image of virus by Arek Socha from Pixabay