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Undiagnosed: My Endless Quest for an Answer

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Solutions to questions and problems provide equilibrium. They give a sense of certainty and acceptance. By not having this, it is potentially the worst part of finding yourself in a medical mystery. How so? It’s exactly what defines the word mystery. The unknown. The worry behind the symptoms. The constant questioning of what is it? The talks you have with yourself in your mind as you try to decipher clues to find a solution. The dread of coming up empty and continuing on with pain that has no end in sight. A wish that you could just find an answer to your problem and that it could be simply fixed with a quick remedy.

Yet, no matter how hard you try — you can’t. Your control is gone. This is what happened to me at age 15 to 31. Sixteen years of pain, disappointment, frustration, loneliness, and the yearn for an explanation.

You may ask, how does a 15-year-old girl handle this? I navigated my situation through the use of soul-crushing perseverance. I thought long and hard about the cliché saying, “Everything happens for a reason.” When I think of my own journey, I quickly say it doesn’t apply to me, but the question remains — does it? It is daunting to think the latter could be true, but in some fashion it is. Perhaps, it was to share this very story with an audience who would no longer feel alone. Who would not feel that their pain is originating in their mind, and who could finally put to rest the voices of others who tried to silence or invalidate them. Maybe it’s to tell a reader to never give up. My hope is to highlight the importance of adversity in the darkest of hours, days, and even years. When it could seem easy or the right thing to do; to surrender to a mystery — it is not. One must continue to find the light at the end of the tunnel and that is exactly what I did.

At age 15 my life changed permanently. I remember the day my heel pain arrived so clearly. It was a crisp fall day and the sun was shining. Except, I did not know that the sun would begin to fade for me and my world would be muddled with darkness for the next decade and a half. I started to get dressed for school that morning when I began to feel intense pain in both of my feet.  As the day continued and the pain lasted all throughout my school day, I knew something was wrong. This symptom marked the beginning of what would be a very dark period of my life.

The following weeks and months ahead were filled with sheer confusion and the beginning of trying to define my mysterious pain. From doctors and specialists who misdiagnosed me with various conditions to painful foot injections; my life as I had known it had disappeared. All of my diagnostic tests came with negative results, but I could no longer stand or walk without severe heel pain and agonizing burning sensations. I looked fine on the outside, but was drowning under the waves of pain that replicated like painful hot currents in my feet. I did not limp, but I had to find a seat within a few minutes of weight bearing. I had about five minutes until the pain would begin. Only five minutes!

I recall one particular disturbing doctor visit to an orthopedic specialist, who told me that he had no idea what was causing my pain and that I would probably have to live with it forever. He explained that for the amount my insurance paid him, he had spent enough time on my case. I still cannot fathom how you tell a 16-year-old girl that she could never walk again without pain, discriminate against her insurance as a way of validating your resistance to help, and be able to look at yourself in the mirror. It was then that I began to learn how cruel and callous people can be, including doctors whom we place our trust in.

Additionally, I found myself alone and isolated. My weekends were no longer filled with outings — the invitations had ceased. The pain had stolen my friendships. Teenagers have difficulty understanding ongoing pain that doesn’t have an expiration date. At school, I could no longer walk the stairs and had to take the elevator instead. I couldn’t walk to the bus, so a van for handicapped students would drive me home. Everything had changed. I wasn’t a healthy teen anymore; I was sick and misunderstood.

Each doctor I visited told me the importance of finding a comfortable shoe to wear to ease my pain. Yet, nothing was comfortable. When I say nothing, I truly mean it — shoes were now my arch-nemesis. It’s crazy to think that shoes can hold so much power in one’s life, but they did. My feet had become so sensitized from the pain that every single shoe, no matter how comfortable it was supposed to be, was beyond uncomfortable. My mother and I would go to stores and spend hours trying on various types of footwear. I remember the stacks of shoes that the salesperson would bring out in the hopes I would say yes to at least one pair, but I couldn’t. Literally every pair increased my heel pain and burning. But more than the salesperson’s disappointment, was mine and my mother’s. We would go in with such high hopes that we would find the shoe that would ease my pain and I could be me again. I think we believed we would magically find this pair of shoes that I would put on my feet and I would be able to walk and stand again. Yet, we never could, no matter our efforts.

Unfortunately, the vicious cycles of empty doctor appointments went on for years. Treatments, therapies, shoes, inserts, medications did not alleviate the intense heel pain. I spent so much time trying to convince each doctor I met that the pain was real and had to defend myself that this was not anxiety or depression. It is sad that many chronic pain patients, particularly women, are often treated that their pain is stemming from their mind. I had been put on several antidepressant medications to try and make me accept the pain. It was no surprise they never helped improve my condition, because the issue was physical and never mental. Also, I had devoted countless energy to defending my invisible disability to friends and family who didn’t believe me. People thought I was making too much out of it, but looking back I never even made enough of it.

I persevered through college and maintained a 4.0 GPA at a prestigious university. I had disability accommodations, parking spots, and my dorm room was close to the cafeteria and bathroom. Although I looked like a typical college student, my body felt anything but the sort. I eventually found a pair of sandals that were somewhat tolerable for me to wear.  I would wear these sandals every day, no matter the climate. When it became cold, I would wear them with socks. Rain and snow; sandals were on. I recall going into the bathroom before my college classes to air dry my wet socks and would sometimes experience frost bitten toes from the cold. Yet, I could not change shoes due to my foot sensitivity. Academically college was great, but physically it was a very difficult and stressful time for me.

Upon college graduation, the search to find a solution became my sole focus. I could no longer try and pretend to live a normal life, because it wasn’t. The pain became even more debilitating. If I went shopping, I would use a wheelchair to help me. The pain was ruining any kind of successful future. As my journey went on, and the doctor visits increased, it looked as if I would never find the reason for my symptoms.  Except, at age 31 I did and everything changed. Despite seeing many specialists, including rheumatologists, who told me I did not have inflammatory arthritis; I did. In fact, a form of autoimmune inflammatory arthritis was the cause of my severe heel pain. Specifically, it was diagnosed as spondyloarthritis, also known as SpA. I finally had a way to treat my pain. My journey was far from over, but my quest for an answer had ended.

Even though I had to accept that I had a chronic disease, I felt relieved. The pain that I had suffered was validated and recognized. It was real and even had a name. Instead of feeling like the only person in the world with these symptoms, it was an identifiable disease that others had.  The answer to my entrapment had arrived which in a sense, allowed me to be free.

Getty image by Mixmike

Originally published: May 3, 2022
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