Send Me More Stories About Chronic Illness
I’ve worked hard my whole life. I’m the kind of person who can’t even fathom taking a break until the day’s work is done… and when it is, I’m still looking for another project to better myself. No one had ever accused me of being lazy before.
Yet the moment I got sick—as soon as I needed a break and have people take care of me for a change–it seemed like everyone came out of the woodwork to insinuate that the real problem was my laziness.
Too Busy To Slow Down
I was first diagnosed with rheumatoid arthritis at 26, after a busy holiday season in which I’d planned an office party for 200 people and published my first book. As my company’s sole event planner, digital marketer, receptionist-slash-office manager, and community action coordinator, it was my job to make sure everyone else was happy, even at my own expense.
Despite enjoying the work and gaining valuable experience, it was often more stressful than the construction management job I’d just left, and the initiatives I’d worked so hard on did little to boost employee morale. I wasn’t in a position to create real change despite expectations and it left me discouraged, but I needed this job. I had rent to pay, and I’d found so many flaws with my previous jobs that my resume had lost focus.
I was exhausted, and I thought that was normal. My boyfriend suggested I see a doctor, but I brushed it off: I didn’t have time to see a doctor.
An Unexpected Diagnosis
But it was inefficiency that eventually caused me to cave. Trying to wrap a small pile of Christmas presents, I could barely do it because of a recurring pain in my hand. For two weeks I brushed it off, letting the pain grow until I kept dropping things, and even grabbing an object the wrong way had me shouting in agony. So, I used some personal time at work, convinced I was wasting it, and went to the doctor.
I’ll never forget the pained look on my doctor’s face as we ran through my symptoms.
I’ll never forget the pained look on my doctor’s face as we ran through my symptoms. He discovered swelling in areas I hadn’t even had pain in yet. A week later, after a day of feeling like I had shards of glass in my wrists making it impossible to even hold a door open for someone, I got the call: my bloodwork showed that I most likely had rheumatoid arthritis.
I knew what rheumatoid arthritis was. I suffered from Raynaud’s Phenomenon as a teenager, when it was explained to me that with my family’s history of lupus, rheumatoid arthritis might be a further risk. I knew the disease for causing debilitation, reducing lifespans, and forcing early retirement. Meanwhile, I defined myself by keeping busy. What did this mean for my career, my home life, and my dreams to travel, which I hadn’t even started? Because of my pursuit of a stable career, I had barely left my home state of Massachusetts.
No Sympathy From Work
Within months of my initial diagnosis, I’d spent thousands of dollars and used up nearly all of my personal time. While my manager and HR knew vague details about what I was going through, I fielded jokes from others who did not. “Taking a half day to play hookey?” staff joked, not knowing how many vials of blood I was about to get drawn, or the way dozens of miles of driving fatigued me. Comments were made when I stopped washing other employees’ dishes because I now had problems holding glasses. Multitasking left me winded, and people raised their eyebrows when I spent less time glued to my desk and more time stretching. Was I imagining dirty looks because I took so many half-days? I wasn’t. Coverage for my job became a serious issue, in part because there wasn’t even a plan in place for when I took a routine vacation. I snapped when someone told me that my absence was truly felt. What about what I felt?
Was I imagining dirty looks because I took so many half-days? I wasn’t.
The solution seemed to be to transfer to another department so I could work from home. However, I continued working both the new and the old position for months, giving both my all. Despite doctor’s orders not to overexert, I still did work that landed me on my couch for days afterwards. When it was suggested that I not be paid for helping my company pull off an event I endured physical pain to produce, it confirmed what I already knew: a corporate job like mine wasn’t going to work for me anymore.
Finding Support Online
Ashley Dufault.
I desperately needed relationships with people who understood that I wasn’t lazy, so during this time, I grew close to the rheumatoid arthritis community on Twitter. There, I met people like me who had had to adapt because of rheumatoid arthritis by leaving their careers, working part-time, becoming freelancers: each was someone, like me, who had been whipped into a vortex by rheumatoid arthritis, and had been forced to question their values. One woman admitted to me that she’d downsized her house and sold her business to create a lifestyle she could be happier with.
“And the fatigue? It never really goes away,” one Twitter poster told me bluntly.
I fought hard against my fate. I tried aromatherapy, exercise, long walks: anything that might help keep my symptoms at bay, and give me my old momentum back. But nothing worked, and on my long evening walks, I would mourn the me that used to be, and all the problems in my personal and professional life that rheumatoid arthritis had caused.
Then, one day, I didn’t care as much. My values shifted.
Being Happy Is More Important Than Productivity
Maybe it wasn’t so important to constantly be achieving. Maybe what was important was to accept yourself and live the life you’ve been given to the fullest. Maybe being busy is less important than being happy. And maybe I don’t owe the people who think I’m being ‘lazy’ because I’m chronically ill a damn thing.
Maybe I don’t owe the people who think I’m being ‘lazy’ because I’m chronically ill a damn thing.
Rheumatoid arthritis forced me to put the brakes on “efficiency” and slow down long enough to chase my dreams, not just my next task. So instead of continuing to work a job that was pushing me to my limits, I decided to believe in myself and pursue one of my dreams: my own writing and editing business. I now have clients who appreciate what I do, and I’ve even finished the first draft of my second book.
Most exciting of all? The woman who was too busy to leave New England is finally going to follow her dreams and do some travel. I have a vacation scheduled to visit a different region of the U.S. this year. It’ll be my first time on a plane, and next year I hope to visit my first foreign country.
Creative Commons photo by Jerald Jackson.
