When ‘Imagined’ Pain Becomes a Real Diagnosis

In this blog post, I go back to 4 years ago and write about what I was living then. I have improved SO much since then, thanks to a starch-free diet. However, I no longer take health for granted.

---

I showed up at my doctor’s office with stickers all over my back. 

The pain usually was most severe in the middle of the night. Yet, I was always surprised by how difficult it was to recall my nighttime pain in the daytime. In the past, I had tried to make detailed mental notes of the pain I felt, but I didn’t believe I was giving the doctor an accurate or sufficiently detailed picture.

“About right here, and here, and here,” I once told the doctor, which was hardly convincing. 

On this particular day, I was determined to show the doctor exactly where my pain was. My husband had kindly helped me put stickers all over my back. I wrote special notes about exactly what the pain felt like for each numbered sticker. I showed up prepared, and I was so hopeful that the additional details I provided would give the doctor some sort of clue as to what was ailing me.

I thought I might have torn muscles or injured joints. But from what? I didn’t know.  

As it turned out, the stickers weren’t very helpful, because by the time I got to the doctor’s office, the pain had shifted. I now had a splitting headache, and my neck was so stiff I had trouble shoulder-checking during my drive over to the clinic.

The fact that I didn’t have a straight-up answer to where the pain was and what it felt like created the impression that I was imagining it all. Some doctors hinted at this, using my excellent X-ray and blood test results to solidify their belief that nothing was wrong with me. Several health professionals suggested I “try relaxing” and getting more sleep.

But my inability to sleep due to pain was precisely part of the problem. One health professional told me, “Sometimes we start thinking we have pain even though there is no evidence of it.” I wondered if the doctors were right. Was the pain truly in my head? 

After years of unsuccessfully treating localized pain and having several particularly poor nights, I showed up at my doctor’s office with tears of frustration. It hurt just to breathe. Plus, constantly living in pain with no relief in sight was taking its toll.

This time, however, I was determined to leave my appointment with a new direction toward answers. Familiar with my health journey, my doctor said the last option he could think of was to send me for an MRI of my spine. I felt a renewed sense of hope as I left the clinic that day, despite having to wait almost a year for the MRI.

On the afternoon of Saturday, Nov. 2, 2019, I got a call from my family doctor. I was resting in bed at the time and sat up to answer the call. He said, “Good news, you don’t need back surgery. However, something’s not right, as the MRI results show multiple corner bone marrow edema-like foci which suggest evidence of inflammatory spondylitis. I’m going to send the results off to a rheumatologist to see if they have any advice. Whatever it is, you can rest assured that you don’t have to live in pain for the rest of your life and that there are treatment options.” 

This was the first time my pain was supported by visible evidence. I felt validated. My first emotion was relief. My head wasn’t imagining all my pain.

As any “normal” person would do, I started Googling spondylitis and stumbled upon something called ankylosing spondylitis. Upon reading about ankylosing spondylitis, I self-diagnosed. The suspicion of my diagnosis was confirmed by a well-respected rheumatologist nearly five months later.

On that day in early November, I stopped thinking of myself as a healthy person with chronic pain. I became a sick person with an incurable disease. In some ways, I allowed the disease to become a self-fulfilling prophecy in my life. I expected it to progress, and I expected to feel worse. That’s what the textbooks and Google had told me would happen. The pain got progressively worse. The disease won.

In hindsight, I wish I wouldn’t have let AS become part of my identity. A positive attitude when dealing with our diagnoses doesn’t take the physical pain away, but it does give us the energy and courage to prevent the disease from trampling us.

Ankylosing spondylitis was my diagnosis, not my identity. After taking some time to grieve the diagnosis, I pulled up my bootstraps and decided I wouldn’t let this disease progress without a fight.  

---

This blog post was originally published on December 10, 2020 in my Just Keep Swimming column @ Ankylosing Spondylitis News

---