Managing Chronic Fatigue Syndrome and Fibromyalgia
15. Job Options
Work issues can be among the most difficult to sort out. Should you stay in your current job despite the suffering or should you make some kind of change?
If you are on either end of the spectrum in terms of the severity of your illness, the answer may be obvious. Those who are minimally affected by CFS or fibromyalgia may be able to continue working full-time, accommodating to their illness by resting on weekends or reducing their social life. On the other end, some people are so severely ill that they cannot work at all. For them, pursuing private disability payments through their employer, government benefits or both may be the best course. (Disability is relatively common among people with CFS and FM. On average, about a third of people in our introductory course report they receive disability benefits.)
For those in between, here are four options to consider.
1. Get Work Accommodations: According to the Americans with Disabilities Act, employers are obligated to make "reasonable accommodations" for people with disabilities. Such accommodations may include making changes in work schedule (such as using flextime), getting ergonomically appropriate furniture or changing job responsibilities. Utilizing accommodations can be a way to test whether work is feasible. If you are unsuccessful in your efforts to shape your work to your limitations, you may want to consider applying for disability payments or some of the options below.
2. Shift to Part-Time Work: Some people with CFS and FM respond to their limitations by changing from full-time to part-time work. Working 15 or 30 hours a week is less taxing than having a full-time job, allowing for a less hectic pace of life and more time for rest. It may also allow for a more flexible schedule. Reductions in hours can also be accompanied by a changing to a position with less responsibility. Like reducing hours, changing positions can free energy for other purposes, although such a change requires some emotional, as well as financial, adjustments.
3. Take a Leave of Absence: Some companies allow employees to take a leave of absence for periods up to several months. Being off work can allow you to focus on healing and may help you clarify whether you can work and, if so, how much.
4. Change Careers: Lastly, you might consider changing careers to pursue work that is consistent with the limits imposed by your illness. People in our program have made changes to positions with less responsibility, to jobs that were less taxing emotionally and to work that was less physically demanding. Some have developed home-based businesses, especially ones that allowed them flexible schedules to accommodate the ups and downs of their illness.
One Person's Solution
Occupational therapist Kristin Scherger describes how she resolved her dilemmas about work in her article Expanding My Envelope: How I Balanced Work and CFIDS. (CFIDS is another term for Chronic Fatigue Syndrome.)
After she became ill, her first attempt to combine work and CFS was to switch from full-time to half-time work, but she still experienced high symptoms and her life felt out of control. Next, she tried working as an on-call OT, but that was not successful either. "I would work myself to exhaustion, then require days of rest to recover. My life remained on a constant roller coaster." She felt frustrated at her patients. "The career I once loved had become a nightmare."
Over time, she recognized that she wasn't improving. Logging convinced her that she was outside her energy envelope. She rated herself about 30 on our scale on days she worked, but 45 when not working. She decided that if she didn't change careers, "I would never get off the roller coaster." She was able to achieve stability and expand her energy envelope by switching to an administrative position. She wrote about her new life: "My activity level and symptom level are now even better than those times a few years ago when I was not working at all." She rates herself at 60 most of the time and sometimes higher.
Kristin's story illustrates two themes we have seen often as people struggle with balancing illness and work. First, finding a long-term solution took some time. Kristin tried several arrangements before finding one that worked for her. Second, the eventual solution respected her limits. Her attempts failed until she found a situation her body could tolerate. Once the strain was removed, her body was able to heal enough to expand her limits.
Note on Disability in the US
Deciding when to apply for disability is complicated. Eligibility for disability is based on recent earnings, so waiting to apply can create a complication. If you switch to part-time work over an extended period of time before you apply for disability, you might lower how much you will receive under disability, since the amount of payment is based in part on earnings. If part-time work does not reduce your symptoms, it may be better to apply for disability quickly to maximize the size of your monthly benefit.