The Elusive Diagnosis

Dedicated to all my fellow "spoonies" who remain undiagnosed. You are seen and you matter.

As I pick out my clothes for the day, I am already thinking ahead to this afternoon’s appointment. Which outfit will be best to help me be taken seriously by my doctor? How can I find a blouse that says “I am a rational, believable, professional woman” and avoid any accessories that might paint me as a hypochondriac or anxious basket case? One of my friends who also struggles with a chronic illness advised me not to wear makeup to my doctor's appointments stating, “If you look too good, people don’t want to believe that you’re sick.” So now I’m trying to look “potentially ill” in addition to appearing believable, articulate, and professional. Ok, got it. This is all so stressful and confusing. I pick out an outfit that I think will do the job and pack it in a drawstring athletic bag to change into after work.

I am grateful for the chance for some distraction as I head out the door to teach art classes to kindergarten students. Working part time over the summer has allowed me some much needed rest after balancing a full time teaching schedule and an undiagnosed chronic health condition all year. It seems like every other month I would show up to school with some new injury, to be greeted by comments like “Oh no! What happened this time?” and “You’re broken again?!” The question askers are well intentioned, I’m sure. But this does not alleviate my weariness at answering these same types of questions over and over again for the past four years. I too would like to know what is happening and why my body seems to be broken again and again, but up until this point, I have had no answers.

The truth is, I have barely had the time to think about those questions. I have been more preoccupied with solving the individual problems as they come. A new joint is flared up with pain. How am I going to make it through the day at work? That bone in my foot is hurting again, I better get myself back to the orthopedic doctor as soon as possible. My hand is aching so badly today. What happened to my wrist brace? It crosses my mind from time to time that it seems unusual how quickly my body gets injured and how slow it is to heal, but rather than seeking out an underlying cause, I have been focused on simply trying to keep my head above water from day to day.

However, the day my orthopedic doctor shared his suspicions of an underlying condition, something clicked.

“You have so much migratory joint pain that doesn’t seem to be letting up. That’s abnormal in someone your age. I think you should see a rheumatologist.”

For some reason, these simple words spoken by my physician felt incredibly validating. My struggle with chronic pain has felt anything but normal, but it has become so ingrained in my life that I have stopped asking questions and have been trying to just accept my new reality. However, bolstered with this acknowledgement from my doctor that so much pain is not typical in someone my age, I began the process of seeking answers.

I was able to get an appointment fairly easily with a rheumatologist who was recommended to me by a friend. A month before the appointment, I began to prepare. I made a chart of all the injuries and strange symptoms I have had over the last ten years, when they began, how they occurred, and if/when they resolved. I contacted the medical offices of every doctor I’ve ever been to and tracked down all of the MRIs and physical therapy notes I could find. I then sent everything to the new doctor I am about to see. A few weeks before the appointment, I received a packet of forms in the mail from the rheumatologist’s office. I filled everything out and dropped it off at the office the week before, rather than waiting until the date of my appointment. I did all of this because the possibility of uncovering a reason for years of chronic pain is tantalizing. It could help me make sense of my past and also potentially help me to have a healthier future. It could explain why I have to live with so many limitations now that I didn’t before. Some people hope that when they go to the doctor, the doctor will tell them that they are well. But people like me, who already know that they are not well, are desperate for someone to be able to tell them why they are sick.

I walk into the rheumatology office with my heart beating out of my chest. I could emerge from this appointment with the answers I’ve been seeking for so long, or I could come out empty handed, with another door shut in my face. But which will it be?!

Not long after I arrive, another patient is called back for the doctor that I’m here to see. So, I know that it will be a while before it’s my turn. The long time in the waiting room calms me down. I read a book and try to relax. When the nurse finally calls my name, I am feeling clear headed and ready for whatever comes. She leads me back to the examining room to wait for the doctor. After a few minutes of silent prayer, I hear a knock on the door. I take a deep breath and answer “Come in!”