In my early twenties, I woke up one summer day feeling as though the tops of my hands were badly bruised. I figured I could have slept weirdly on my wrists, or perhaps I had typed or written too much the day before. I wasn’t concerned; pain was always temporary.
But wintertime brought with it a new change: beginning with my left ring finger and gradually affecting all of my fingers on both hands, the cold air began turning my fingertips yellowish-white, numbing each digit until I retreated indoors to warmth. It didn’t take me long to discover I had Raynaud’s disease, which is actually quite common and especially in women. This was no big deal; with the right winter-weather preparation, I could easily contain the numbness and tingling.
I made a few minor lifestyle changes. I gave up lacrosse and building snowmen. I bought fur-lined gloves and woolly socks when the disease spread to my toes. What I didn’t know then was that this was just the beginning, the “starting point” for my tiring testimonial that I would tell to 10 different doctors over the next two years.
“Start from the very beginning,” each doctor would command. “When did you first notice these changes?”
Common disorder
Mine wasn’t an uncommon story, I would soon learn. During a woman’s childbearing years (usually ages 20-35), it’s typical for countless autoimmune diseases to surface and arrange their ongoing ambush. Multiple sclerosis, Sjogren’s syndrome and cirrhosis are just a few that activate during this period. According to the American Autoimmune & Related Diseases Association, of the 50 million Americans suffering with an autoimmune disorder, over 75 percent are women. I am one of them.
I was shocked by how “normal” this seemed, based on all of the statistics and books I read. As told by my 10 doctors, I am the inevitable stockpile of my family’s genes – grandparents with diabetes and psoriasis, parents with arthritis and Grave’s disease. It only made sense for me to develop these issues, they assured.
But I wasn’t reassured. Soon, it wasn’t just Reynaud’s disease, but an onslaught of joint pain, unquenchable fatigue coupled with trouble sleeping, and grossly swollen feet, ankles, and wrists. The diagnosis, though varying by doctor, was that I had some odd combination of systemic lupus, rheumatoid arthritis, and connective tissue disorder.
“But not to worry,” one doctor said. “90% of patients with lupus are women, even young women like yourself, and I have treated many over the years with the right medications.”
I wasn’t convinced, especially when the medication that most of the doctors offered had side effects like hair loss, organ damage, liver dysfunction, dizziness, mental depression, weight gain, fainting, bleeding of the intestines, sun-sensitive skin, stomach ulcers, etcetera. The list went on and on, providing one unpromising and simply terrifying consequence in addition to my already-grating disease symptoms.
Breaking point
I decided against the heavy-duty medicines and stuck with something less damaging but also less effective. Though my symptoms were bearable for a year, I reached a point when frustration took over. I was tired of buying a water bottle at a cafe and having to ask the barista to open it because my fingers couldn’t grip the lid. I was tired of neither fitting into my favourite pairs of heels nor being able to stand for more than an hour without needing a break. Frankly, I was just tired – all the time.
Perhaps worst of all, I scored a part-time job at one of my favourite bookstores and worked for a mere four weeks before I had to quit. Just when I thought my swollen ankles and wrists could manage a few hours of restocking shelves and working a register, the pain reminded me otherwise. Barely able to walk out of work after my shifts, I knew I had pushed my body too far.
How did this get so bad?
This isn’t meant to be a story of a diagnosis or of a cure, nor do I mean to craft any sort of pity-party or forum for emotional support. In an unexpected interplay, understanding my body has led to a coming together of mind and spirit. Everyone knows the mantra of “mind, body, spirit,” but I can promise that it can truly prove to be a union far greater than anything physical or earthly that I’ve encountered while trying to combat this illness.
I remember a long time ago, my mom’s friend Janet was diagnosed with breast cancer. During every one of my brother’s baseball games thereafter, as I sat with all of the moms while they gossiped and left the game-watching to the dads, Janet would announce her latest diet plan or exercise routine to beat her cancer.
“Shame on you if you don’t research the hell out of your illness, because the doctors won’t do any of that for you,” Janet said one day with wide, insistent eyes. She was sure of it: she could beat her own sickness with the right combination of a healthy mind, body, and spirit. And she did.
Acceptance
It’s funny as a young girl I remember sympathising with Janet’s daughter Peyton, who was even younger than I, knowing that she had to watch her mother cheat an untimely illness so their lives could go back to normal. I didn’t even begin to comprehend what it was like for Janet to put that much faith in herself, in her own human ability, to find her own cure.
Through my darkest times of facing my disease, I hardly thought about how to “win” against my diagnosis. I wallowed in self-pity and aggravation, often bringing myself to tears that I might not be able to do the thing I love most in this world – write – because of my lousy, painful joints.
But lately, Janet’s story is all I think about. I’ve even found a few books where other scores of women, ranging from age 20-60, simply refused to accept their diseases as the end-all-be-all. The disease would not define them. Instead, they would define how their disease fit into their lives and the sickness wouldn’t limit them in the slightest way. That’s who I want to be: a woman with a little less energy or with some joint pain in the mornings, but an overall better, healthy individual with the wisdom that this illness is not who I am.
The body is extremely underappreciated until something goes wrong. I’ll admit I never once thought about doing things in moderation or deciphering the phrase, “You are what you eat.” And though I’m still learning and listening to the needs that my body articulates, I’ve been able to eliminate toxins that are destroying who I want to become – the toxins that trigger the pain, tiredness, and sadness.
The Beat Zens were onto something in those mountains when they understood the “mind is the maker.” My feet ache, but I take walks most nights around this beautiful campus. My hands swell like paws, but I read and write (with a pen!) most nights before bed just like I always have. There’s a way to tell yourself, “I’ll beat this,” but to actually mean it takes a unity beyond reason, beyond physicality. That’s the unity worth seeking.
