When my PJ Media editor suggested that I write about having lupus, I almost said no.
I was diagnosed with SLE in 1991 and have been in remission since around 1995. My book about living with this chronic illness came out two years later. Like most writers, by the time a book comes out, I’m so sick – pun intended – of its topic that I dread having to revisit it.
Having been in remission for almost 20 years, I can honestly make the rather unusual claim that not even the perspective of hindsight has changed my ideas or feelings about what being a pain-wracked invalid was like. Not even a little bit.
I feel like I’m supposed to say the opposite: that looking back, I could have “handled” my disease differently, or learned other, “better” lessons from it, and so forth.
But then, from the very beginning, I didn’t fit the mold of the “disease of the week” TV movie heroine, or some “poster child” for lupus.
Here are some things I learned (or, perhaps more accurately, some pre-conceived ideas I had reinforced) when I was at my very sickest.
Warning: What follows is NOT inspirational. At all.
3. Canada’s health care system isn’t all good (or all bad)
My country’s national religion isn’t Christianity, or even hockey.
After a lifetime of excellent health, I was suddenly sucked into the Canadian “healthcare” system at age 27 and escaped about five years later.
That time period could have been much longer, though. Whereas most lupus patients initially endure years of uncertainty and confusion, I was diagnosed in seconds, on sight, when I presented with what the walk-in clinic doctor called a “textbook” butterfly rash.
Blood tests quickly confirmed his assessment. I soon developed crippling pain in joint after joint until my entire body was wracked with arthritis. Then I got myositis, which is basically arthritis of the muscles.
Have you ever accidentally been electrocuted when you plugged in your hair dryer or Christmas tree lights? I felt that sensation from neck to toe, 20 hours a day, every day, for the duration of my illness.
What delayed my eventual recovery, I believe, was the system.
In socialized medicine, shortages aren’t bugs, they’re features. The system can only “work” if care is parceled out slowly and stingily, so that – frankly – enough sick people will conveniently die, thereby freeing up spots on the always-lengthy waiting list.
Picture a Ponzi scheme, but with patients instead of investors.
My cat can get an MRI faster than I can.
I was getting sicker and sicker, but had to wait months between appointments and bloodwork, so I could get yet another tweaked pharmaceutical regimen (that still didn’t help).
I was only hospitalized when I was on death’s door, and finally received the high-dose prednisone treatment that turned me around.
Even then, my rheumatologist had to fight to get me a bed.
Having said all that:
Lupus never cost me a nickel out of pocket. My examinations, treatment and drugs were all covered by some government program or other.
Buying private health insurance or paying for your own treatment is – mostly — illegal in Canada, so I had no option. Canada’s wealthy and privileged do, of course, and exercise said options regularly.
So while on principle I objected to receiving “free” healthcare (and then going on government disability), my only other choice would have been to continue to endure searing, incapacitating pain and, I suppose, eventually die either by lupus or by my own hand.
I believe in a mixed private/public health care system.
I did before I got sick and believe it now.
2. People are lazy
My physiotherapist told me I was the only client she had who did her prescribed exercises throughout the week, like we were supposed to.
When I attended a mandatory “how to write a resume” workshop run by the government disability office, the team leader said I was one of the only “clients” he’d ever had who actually wanted to get off “welfare.”
For way too long, I let myself be “the girl with lupus.” When somebody else’s friend got the disease, I got trotted out to talk to them about it.
So I told them I wore a 60 SPF sunscreen every day, winter and summer, and a big ugly hat that I hated but wore anyhow. I told them they’d probably have to cut back on activities, watch their diets, get more rest than the average person, and brace themselves for a possible lifetime of pain and fatigue.
When I finished my speech, they all asked the same thing:
“But isn’t there just some drug I can take to make this go away?”
This wasn’t a spoiled, Western, post-modern “cultural” attitude, either. A recent refugee from Africa asked me that question, too.
Hadn’t their doctor already told them there was no such magic pill? I wondered. Why couldn’t they accept this, and then proceed accordingly?
And even if there had been a wonder drug, they probably wouldn’t have taken it properly anyhow.
Or, if it wasn’t covered, they’d complain that it was too expensive (after all, they had bingo and fake nails and cigarettes to pay for).
Or they didn’t like the side effects. (Believe me, I didn’t either.)
Years later, when so many people were shocked and disgusted by the pathetic “learned helplessness” on display after Hurricane Katrina, I was not.
I know I’m supposed to say that being gravely ill gave me insight into and empathy for other people’s suffering.
What I did (re-)learn was that many individuals compound their own suffering out of willful ignorance, comfortable inertia or both.This leads to my last (and most lasting) lesson…
1. I am not wired like other people
My first reaction to my diagnosis was to learn all I could about my new disease. In those pre-internet days, that meant walking straight from that walk-in clinic to the library, then to the local arthritis association, to pick up all the books and brochures they had.
As I soon discovered (see above), this behavior marked me as… singular.
On a rare “up” day, I went to my first lupus “support group” meeting. It was also my last. I left feeling more bummed out, and alone, than ever.
I declined to participate in the “disease industrial complex” of colored ribbons and boring banquets and traffic-jamming marathons, too.
Because lupus is stress-related, I tried meditation. It made me hyper.
I didn’t walk around resentful because, over night, all the world’s doorknobs and entranceways and bathtubs hadn’t been redesigned to accommodate me. I sure as hell didn’t sue anybody over it.
Countless well-meaning folks told me that Western medicine was useless and evil, that I should try herbal remedies and New Age stuff. I didn’t listen. Indeed, only massive doses of highly disfiguring prednisone, over a dangerously long period of time, had any profound and lasting effect.
Meanwhile, my determination to get off disability and go back to work was greeted with disbelief. Why wouldn’t I want to sit around collecting free money for the rest of my life?
The weirdest thing?
Getting lupus was one of the best things that ever happened to me.
Would I still be saying that if I wasn’t in remission? Probably not. But I am (at least as of this morning – I could have a flare up at any time). So the question is moot.
I learned a lot about myself when I got lupus. Not much of it was particularly noble or inspirational or attractive. But it was real.