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 why she had emphasized that. NSAIDs (like the one she had prescribed that morning) is the first form of treatment, accompanied by regular exercises (especially of core and back muscles) and stretching. Basically, “keep moving so that your joints don’t fuse” is what I tell myself every time I don’t feel like working out.
Then again, I hadn’t done the tests – there was no reason to jump the gun. I texted my sister with the news, asking her not to tell our parents.
Everything made sense as I read the article though: why the doctor had seemed less concerned about the knee – which could have been a symptom of influenza – until I mentioned the back pain.
So I knew. I knew this was it. But I wasn’t ready to face this disorder. I had been craving a diagnosis, but I hadn’t imagined that. I thought it would have been something like “yeah your spine is a bit curved, do some physio.” I was not ready to deal with a disorder that I had virtually no control over and that could not be cured.
I got off countless stops before my own and ventured into my favourite store to get my mind off the crazy unfounded thoughts. I came out with a Ted Baker fascinator hat I would have never allowed myself to buy under normal circumstances and that I would wear probably once a year.
I did all the tests prescribed. It took me over a year to go back to the doctor’s and face the results. My sister forced me to go – she had noticed I would stretch longer in the morning, sometimes throughout the day. And sometimes, not too often, I would take a pill with my breakfast. My sister threatened to stop talking to me if I didn’t go.
I was too petrified to know. Under normal circumstances, I would have hated not knowing. I hated taking my pills often because I didn’t want to rely on them: in a way it would have been admitting to the issue. I didn’t want people to ask questions, I didn’t want people to know.
Yet, I carried the original paper the doctor had written the diagnosis on in my wallet every day.
I also hated myself for not having the courage to face it. I would tell myself, my sister would tell me: some people have it worse.
“But some people have it better.”
My sister – a hematologist-oncologist – is the worst and best person to remind you that someone has it worst. In perspective to the diseases she deals with daily, I am a healthy young woman with a slight hic. So I felt guilty on top of everything else. Stop whining Rux. You’re fine.
Someone will always have it worse, someone will always have it better.
By the time I was facing my doctor again, she had moved to her own office on the 7th floor of a building in Westmount. The x-rays were inconclusive. Additionally, I did not have the genetic marker for it.
Again the weird combination of emotions: relief and disappointment. Is that not it then? What causes my pain then? It’s there. I told her about my lower back and waking up due to the pain. In my teenage years, I would barely move in my sleep and be fine. Now, 2 hours of sleep in one position and I will wake up in a lot of pain and stiffness.
“I believe you, I know that you’re in pain. I’m unwilling to give you more x-rays, but we have to. We’ll also schedule an MRI just in case. And if that also does not show anything, I’ll ask my colleague for his thoughts. We’ll figure it out, don’t worry.”
So I went back for another x-ray, this time of my lower spine and the pelvic bones.
Months later, 2 weeks after coming back from Ireland (in 2016) I was scheduled for an MRI at the Montreal General. By then I had come to terms with it, mostly because the only two people I talked about it with were my doctor (a rheumatologist) and my sister – 2 specialists. And they were always very enthusiastic and positive. I now realize it is part of their job description to be positive.
They really were the best support system I could have had during that time. I perceived the arthritis as something weird and abnormal I did not want, they helped me see it as just another part of me. No matter what, it was there. It was better for me to accept it and treat it with respect.
The MRI results finally came back; my sister messaged me to tell me to book an appointment with my doctor. They happen to be acquaintances from university and they had talked about the results (I had given written consent to my sister to check my file and discuss the results).
And so, the results. Finally. Almost 2 and a half years after the first rheumatology appointment. Ankylosing spondylitis. Confirmed. Well, at least that’s that.
She told me she’d follow me closely, we would work together and everything will be managed well. I believe her. She told me to see her every 6 months. She doubled my medication dosage (twice/daily).
I still only take the pills on a needs basis – like this week. I can go weeks without taking any, thankfully. Exercising and stretching is routine.
Fact: Manageable chronic disorder. Well surrounded.
Also fact: no idea how fast it can progress and how much it will. This could be the worst I have it, as it could also not be. No clue.
I am okay with that. I can talk about it. Because there’s absolutely no point in worrying and it’s well managed. But hell, it took me years to accept something that I now consider as almost mundane. On most days, I’m fine. On my worst days, during a flare, don’t ask me to move much. Apart from that, you wouldn’t know.
It takes time to accept things we don’t expect. The worst situation for me used to be not to know, so imagine confronting a disorder with an unpredictable prognosis. This situation allowed me to learn to let go of my anxiety of the unknown, and instead of imagining the worst (wheelchairs… hip replacements), imagining the best (keep going as I am).
It’s hard to deal with and accept a disorder that is not visible. But I realized it was more taxing for me to see it as an “it” instead of a part of me. I cannot change who I am, so I will embrace who I am. It takes time but in the end I realized I’m damn fabulous – with or without my Ted Baker hat.