I was skimming through my Facebook feed during a bout of insomnia last night. A friend’s post explaining her anxiety vis-à-vis unknown health issues caught my eye. She was afraid of being defined by her health, of it impeding on her life and projects – as it had on some occasions during the last year.
I wanted to give her a virtual hug and ended up writing a short comment about how whatever illness did not in fact define her and to instead accept it. I wanted her to know that I knew exactly how she felt, I had been there. It would take time for her to accept the situation, but it would eventually happen.
But how could I fully explain everything in the comment section of her Facebook status? So, to her and others, here’s the story of how I came to accept a part of me. It is my hope you can find some sort of solace in knowing you are not alone and that you will one day come to see it as a part of you, not as it and then you.
I sat in my doctor’s tiny office in the semi-basement of an old apartment building in Westmount. The Dr. examined my knees through my opaque tights, touched the rotula, felt it, moved it. I wondered how they learned about how to feel a rotula in med school.
“Well it doesn’t seem too inflamed now. We’ll send you in for X-rays anyway just in case. An ultrasound for your fingers too.”
For several years, I had complained to my sister about pain in my knees and back. She brushed it off because they (especially back pain) are the most common types of pain. In most cases, they mean absolutely nothing. A week prior to my appointment that day, my right knee had flared up, doubling in size. I couldn’t walk, it was painful to even wear tighter pants. She took notice.
My doctor turned her back to jot down notes. “Anything else? You mentioned back pain?”
“Oh yeah, my spine gets stiff and hurts, especially in the morning after I don’t move for hours.”
“Stiff? Like how?”
“Well I have to stretch it for a bit before I move really – the upper part, close to my neck” I looked at her looking at my back through my shirt. I attempted, “… like everyone, no?”
“Let’s just add an X-ray of your upper back”
I wasn’t following per se. In my mind, my knees were more important but she had seemed more interested by my back. I knew my back pain was slightly abnormal – especially since it had gotten worse in the years leading up.
We’re back to sitting around her desk as it dawns on me that she was about to confirm what I knew deep down: it wasn’t normal.
It was scary and exciting and relieving all at once: finally, a potential diagnosis.
She mentioned: “We can’t confirm anything yet. I need to see X-rays and your bloods but it could be…”
The way she speaks is always so reassuring, she’s so calm. It seemed… benign enough. Some inflammation in the vertebrae. Easy to follow. Could be nothing. Let’s reconvene after the tests. She gave me anti-inflammatory meds to take on a needs basis.
Alright, not too bad. Could be nothing. I was still excited and relieved as I exited her office. In the bus, I typed on Google the words she had written on a small paper: “An-ky-los-ing Spon-dy-li-tis” I enunciated softly at the same time.
I looked for the rheumatology website she recommended and quickly scanned the page:
- Type of arthritis
- Attacks spine, sometimes arms and legs
- Affects mainly male
- May progress to some degree of spinal fusion, known as ankylosing spondylitis (most common; again, most likely affects young males) (read: cortisol shots, hip replacements)
By the time I had reached the section on treatments, my eyes tingled and my heart pounded. I saw myself in a wheelchair – quite dramatic, I know. With newer treatments, it is a disease that is quite easily followed – as my doctor had made sure to tell me, and I then understood