"She was always fighting a battle but her smile would never tell you so."—Nikki Rowe
Trying to work a full-time job like a "normal," healthy adult often feels like a battle—and invariably, a losing one—when you have a chronic illness. Pain, fatigue and sickness are not usually the characteristics of a productive employee.
For nearly 20 years I have fought hard to find a place in the workforce while living with my other full-time job: rheumatoid arthritis.
According to the Arthritis Foundation, "rheumatoid arthritis (RA) is an autoimmune disease in which the body's immune system—which normally protects its health by attacking foreign substances like bacteria and viruses—mistakenly attacks the joints with inflammation. If inflammation goes unchecked, it can permanently damage cartilage as well as the bones themselves."
This July, unbelievably, will be my 20th anniversary of battling against this aggressive and crippling disease.
I was diagnosed with RA at 18, the summer after high school graduation, and it was a devastating shock.
That summer should have been a time of hope and excitement about my new, independent future, but instead, RA paralyzed me with dread and fear. Will the pain stop? Will this disease ever go away? What will happen to me? I felt as though my life were ending instead of just beginning.
Thankfully, of course, my life did not end and I was forced to learn how to cope with RA, physically and mentally. The daily pain, frustrations and anxieties of the disease were difficult to deal with, especially as a young woman fighting against the isolating stereotypes of arthritis being "just mild aches and pains" and an "old person's condition."
I somehow managed to graduate from college, a massive triumph, even though I took a bit longer than my able-bodied peers. I refused to let RA and my swollen sausage-like fingers and wince-inducing sore feet stop me from earning my degree.
It wasn't going to "win." It wasn't going to prevent me from getting an education or from joining the workforce after graduation.
But RA often does win many battles against the body because it's a relentless and sneaky disease. It’s also a disease that affects mainly women, with nearly three times as many women having RA than men in the United States, according to the Arthritis Foundation.
It attacks your body with damaging and debilitating inflammation, afflicts each person differently and has no cure. Joints can suddenly flare up overnight: swollen and angry and throbbing with constant pain.
Living every day with an illness that's like a ticking time bomb isn't easy, and especially not when you're trying to work a regular 8 a.m. to 5 p.m. office job.
RA doesn't care if you have to get up early the next morning for work, go to a meeting, or stay at your desk until the end of the day when all you want to do is lie on the couch with your feet up. The disease flares whenever it feels like it, for as long as it wants, and you're forced to give it all of your energy, time, effort and attention.
Even if you're not having an actual RA flare-up, the disease is always there in some way, weighing down your body and spirit. Fatigue, stiffness, random odd pains, swelling, low-grade fevers, headaches, and several other exhausting symptoms are also caused by RA and chronic pain—not just joint pain. These lesser (or lesser-known) symptoms can make holding down a job often feel impossible.
After graduating from college, I tried to enter the workforce as a full-time, first-shift employee—mostly working administrative office jobs. While I was able to do this pretty well for the first month or so of a new position, sooner or later the early mornings, long days and inflexibility of my work schedule would start to wear on me—often triggering RA flare-ups.
Scheduling and going to medical appointments, of which I have several per month, also becomes stressful when trying to work a full-time job. Employers are usually not very understanding about employees regularly missing work, no matter if it's health-related.
I remember calling my boss from the Mayo Clinic in Rochester, MN, asking if it would be OK to miss work because I needed to spend the night there for additional appointments. That wasn’t an easy call to make.
When I’m working any job, full-time or part-time, I absolutely hate asking for extra time off for doctor appointments. I often feel like a burden as well as guilty and ashamed that I need "special treatment," unlike my healthy co-workers. Many times I have had to cancel appointments or I just don't make them in the first place because it's too stressful.
That RA is an "invisible illness"—meaning that to most people I look "normal" on the outside despite suffering from serious pain—adds to the challenges of trying to work while living with a chronic disease. When you look healthy, employers and coworkers have a hard time understanding what you go through on a daily basis.
RA isn't a temporary sickness that you "get over." It's a wildly unpredictable disease that's deeply ingrained in every part of your life. You can appear "fine" one day and unable to walk the next. Most people find this strange contradiction difficult to grasp.
During all of my 20s and into my early 30s, I felt forced to ditch the regular full-time office jobs for temporary work. Temping, while it didn't provide for significant income or any benefits, gave me the flexibility to have time off after an assignment had ended. Physically, I always need a break to rest and recharge due to my RA and chronic pain.
Peppered in between the temporary office gigs, I also worked a variety of odd jobs over the years. I babysat, dog-sat, worked as a hotel concierge, photographed weddings, taught middle school kids English in France, served legal papers ("You've been served!"), was a debt-collector (worst job ever), and I can't even remember what else. But as you can imagine, trying to earn a steady living in this erratic way was stressful and difficult to sustain.
Now, at age 38, I think I've finally found a pretty good balance of my work life and "RA life," working as a (mostly) part-time K-12th-grade substitute teacher.
The pay is good, the work is often fun and rewarding, and most importantly the schedule allows for a lot of flexibility. Having flexibility in your work life is crucial, I've discovered, when living with a chronic illness.
Living with rheumatoid arthritis is a full-time job itself—it's constant. And unfortunately, when you have RA there is no time off or vacation from the pain and disease. Despite this, I adamantly refuse to give up on my goals of having a productive and meaningful work life and life in general.
RA will not rob me of this, no matter how hard it tries.
This story is part of Spring.St's Back to Work series. You can find more here.