Several years ago, I wrote a story for Access Press entitled, “Repetitive Motion Disorders: The Unseen Disability.” It detailed the medical and legislative challenges faced by people who live with these disorders, also called cumulative trauma disorders, musculoskeletal disorders, repetitive stress injuries and repetitive strain injuries. In this article, I will refer to the disorder as repetitive stress injuries (RSIs) and share my personal experience. RSIs really are disabling, yet remain highly misunderstood and stigmatized by employers, insurance companies, doctors and even the people who suffer from them. That is why I’m telling my story.
Note: The majority of this article was written with voice activation software.
It was 1996, and I had just moved to Minnesota from New Jersey. I had gotten a great job writing and editing proposals, a skill I had always wanted to develop. I loved writing and editing, and had worked in New Jersey as the managing editor of a weekly newspaper and as a staff writer for two international medical trade publications. In addition to learning a new skill set, this job gave me the opportunity to be financially independent—I moved into an apartment with a feeling of pride.
Like many others in similar positions, my typical day began at 8 a.m. and ended at 5 or 6 p.m., with an occasional weekend. Sometimes, however, I worked until as late as 9 p.m. if we were on a deadline. I was 30 years old; I didn’t think anything of working such long hours. It wasn’t unusual for me to sit at my keyboard for two to four hours at a time without a break.
While typing one day in 1997, my arms, from the elbows down, started hurting. The pain seemed to be worse in my right arm; I attributed it to having banged that arm the week before. Thinking that it would probably go away on its own, I kept working, but the pain only seemed to get worse. I finally went to a doctor. The first doctor really didn’t know what was wrong, so he referred me to another. The new doctor ordered some X-rays, which didn’t show anything wrong. That was when he began to suspect I had a repetitive stress injury related to the keyboard work I was doing.
My first reaction was disbelief. I couldn’t understand how someone as young as I was could possibly have such a disorder. When I thought of RSIs, I thought of people who worked in factories and of women doing backbreaking housework in the 1800s. I assumed, wrongly, that the problem would just go away.
At first, my doctor thought I had carpal tunnel syndrome, and he ordered me to get an electromyogram (EMG) test to confirm his diagnosis. An EMG is administered by inserting needles into the patient’s arm to determine the reaction of the nerves connected to the areas in pain.
I later found out this test is extremely common among people diagnosed with RSIs. My results were negative, showing that I did not have carpal tunnel syndrome. After re-examining me, my doctor diagnosed me with some form of tendonitis, most likely DeQuervain’s tenosynovitis. This condition causes the tendons (and the shaft surrounding them) above the thumb to become inflamed. By this time, I was having pain above and along the side of both thumbs and forearms, and tingling in the right thumb. I also had a “popping” sound in both wrists whenever I moved them, evidence of the inability of the tendons to slide through their sheaths because of the swelling. My doctor prescribed some heavy-duty anti-inflammatory medications, a custom-made splint for my right arm and weekly physical therapy. He also told me to file a worker’s compensation claim.
Like a lot of people, I was afraid that if I filed a claim, I might lose my job—but my doctor explained that that is illegal. Also, being a positive thinker, I figured I would file the claim, my company would reimburse me for any medical expenses and time off, and I would heal from the injury.
One of the things that is very important for workers filing a claim is for them to try to help their doctor determine if any limitations should be placed on them at work. This can be extremely difficult, because often the symptoms of an RSI come and go. What most people don’t understand is that by the time a person begins experiencing symptoms, a lot of the damage has already been done.
One thing my doctor did order for me was an ergonomic chair—which he wrote a prescription for—and an ergonomic evaluation of my workstation. My company was cooperative and ordered both. It was discovered that my monitor was too low—which had caused me a lot of neck pain that had radiated down my arms—and that I wasn’t sitting right to prevent injury (arms should be at a 90-degree angle to the floor, with wrists straight and not resting on the keyboard; feet should be firmly resting on the ground or footrest). These measures seemed to help, but not for long. The pain not only persisted, but grew worse. Physical therapy did not help and I was going to work with splints on both arms, drugged up on anti-inflammatories and assigned to reading industry journals—which although educational, had nothing to do with my original purpose in getting hired.
During this entire time I took maybe one week off; it’s hard to remember everything, it was all a blur. I don’t remember why I didn’t take more time off, except that my doctor had only implied I should take one to several months off, and had not officially prescribed that. Like many hardworking young people, I couldn’t imagine taking a month off; I was afraid that if I were to do so, I would lose my job. I still hoped I would get better soon and I didn’t want to be perceived as someone who was “milking the system.”
Not contributing to my team at work was really hard on my self-esteem. To make matters worse, people began whispering around me—as if I wouldn’t notice they were talking about me. On one hand, I realize now how difficult it must have been for them to understand how disabled I had become; on the other hand, many of the people I worked with simply stopped talking to me, adding to the sense of isolation I already felt. Underneath all this was a growing resentment among some of them that I was no longer doing my share of the work. I also noticed that the topic of RSIs had become taboo at this company, despite the fact that other people who worked there were also having problems (most of them either weren’t as badly injured as I was, or worked in pain without telling anyone). My boss feigned support; in reality she really didn’t understand my problem, and didn’t have time to deal with it. I think she hoped, as I did, that I would get better and get back to what I had been doing before I got injured.
Unfortunately, this never happened, and although my symptoms lessened from my respite from keyboard work, they continued. I knew I should probably just stop working for a while, but I could not afford to do that. I hoped that a new job with less keyboard work might be the answer. So I left my job for another one at a nonprofit, where I thought I would be doing a wider range of activities. The bottom line: No matter what I did with my hands, it would probably hurt, so changing fields entirely didn’t seem like a good option for me, either physically or financially—but I had to see if a new position with different responsibilities would make any difference. The new job also involved writing and editing at a keyboard, and it wasn’t until I had been there for about six months that I realized it, too, was only making my situation worse.
It was with a great deal of sadness that I left the job, which I loved doing, and where I had met a number of wonderful people. But I knew that if I didn’t make a major change, I would injure myself to the point where I was completely unemployable. A few days after I left, I collapsed in total despair, wondering what to do. I believed that there was really nothing else that could be done for me medically and that the only thing I could do was rest, ice my arms and take anti-inflammatories as needed. The worst part was that I had always envisioned myself as a successful professional—and here I was disabled, living off my husband’s income and not even able to take care of domestic tasks like grocery shopping or cleaning.
To be continued…