When the pain came, I carried it on my shoulders as I waded through the polluted, dirty water of Lake Ontario. When I made it to my desk in the Toronto Star newsroom, I wrote the final words on Vicki Keith conquest.
“Five down. None to go.”
I followed her in a boat across Erie, Huron and Superior, Ontario (twice), and almost Michigan, and that’s the best lede I could come up with. But at least it was brief.
My knuckles were swollen, my fingers bunched into fists. They looked like boxer’s hands. I punched gingerly at the keys, wincing. It was like repeatedly hitting a block of cement.
I did not go to emergency, as I had when I was in third-year university. I calmly called my rheumatologist at Mount Sinai and asked for an appointment. His office manager did not see the same urgency that I did, and so she booked me the next available appointment, several months from then.
“But what about my heart? Won’t it go to my heart?” Could she not hear the panic in my voice as I thought through the potential for a serious escalation?
“I’ll make a note for the doctor.”
So I spent the rest of the summer hobbling to assignments, and planning a trip to Greece with my boyfriend from university, who worked for CBC TV in Saskatoon.
I also called in a favour from a med student friend, who told me he’d done a rotation at Toronto Western Hospital with one of the most renowned and well-liked rheumatologists in the city. I wanted someone who shared the latest research, actually told me that sun exposure was a lupus trigger, and was firmly in my corner when my hands ballooned into boxing gloves. I was sick of feeling like a stupid girl who didn’t know enough to manage her own illness. My friend said he’d try to get me an appointment.
As I waited for one or the other rheumatologist to call, I tried to process my shock at having the wolf slink back into my life; and the unfortunate fact that the whopping doses of prednisone had not obliterated the hollowed out, yellow-eyed ever-hungry creature called lupus that was following me.
On some level I’d understood that the lupus was a lifelong companion, but the 80 mg of prednisone had been a huge hammer, more like having an anvil dropped on my head.
I looked around at my newsroom colleagues, longing for someone to confide in. All my best friends lived elsewhere and my closest work chums were in the east bureau of the Toronto Star.
So instead, I focused on figuring out how to be sick at work and how to work sick.
This was the hardest part then, and would remain my greatest challenge,
If you come into a workplace with an obvious disability— some physical limitation that could be accommodated with a certain kind of desk or chair— employers generally know what to expect, how to help you do your job. Whether they want to is another matter.
But with a relapsing and remitting chronic illness, it requires a flexible and compassionate workplace to design accommodations because your situation can change from one day or week, to the next. The chronically ill person wakes up each day wondering what she will face and how to negotiate that with her employer.
The head of my summer student program knew I had lupus, and perhaps my editors wouldn’t have been surprised if I presented a note from my doctor—if I ever got an appointment—asking for some time off, or a relaxed work schedule for a few months.
But I was only 23 years old, new to all this, and I had no idea whether in the midst of an obvious flare I should work. I would have needed some sort of occupational therapist, social worker or doctor to tell me whether to take a break or shrug it off.
I couldn’t know if the newsroom held colleagues who were mentally ill, had ulcerative colitis or rheumatoid arthritis or some other unpredictable condition, so I didn’t know where to look for guidance.
Back then, I felt my only option was to suck it up and do the best I could.
Some days, my fingers were so swollen I couldn’t hold my pen to write or open a bottle of juice; my legs were so rigid and unbendable that racing out of the newsroom to grab a cab was a very humbling experience. Other days, I was fine and I held my breath, wondering how many days the absence of hurt would continue.
At work, almost no one noticed as I struggled. I imagined telling my desk mates that I was really struggling, but to what end? I wasn’t looking for pity, or even someone to screw the lid off my juice bottle. (I could do it with the crook of my elbow). I also feared I’d seem weak, and that didn’t fit the idea I had of myself.
There was one day that a new colleague noticed I was struggling to dial the phone. When she asked what the matter was, I told her that I had lupus.
Oddly, she asked if it was some sort of “weird cold.”
Her question made me instantly angry, maybe because she was unknowingly diminishing what I’d told her. Suddenly I was regurgitating a medical pamphlet I’d committed to memory.
“It’s a condition that can attack your heart, lungs, brain and even the kidneys. You never know when it’s going to hit you. It’s nothing like a cold. It can kill you.” I was surprisingly bitter as I spoke.
Although I knew almost no one had heard of lupus then, I wanted to make her feel as stupid as possible.
This approach was not going to win me a support system. Eventually I got my appointment with the new rheumatologist and he was everything I’d hoped for: gregarious, humorous and compassionate.
He also told me something disturbing. My blood work was not great. My levels were extremely high of the anti-double-stranded DNA antibody (anti-dsDNA), which is a specific type of antibody found in about 30 per cent of people with lupus and less than one per cent of healthy people.
In addition, my white blood cells were abnormally low. Another indicator of active lupus. Finally, my level of complements—a group of proteins that protect the body against infection—were low, indicating they’d been used up by the inflammation caused by lupus.
If he hadn’t seen me sitting there in front of him, in my little blazer, skirt and work pumps, my blood work would suggest to my doctor that I was likely at home, in bed.
He concluded that the stress and excitement of my reporter job actually was good for me. In essence, he was telling me what I wanted to hear, but maybe not what I needed to hear.