Why is it harder to work with MS?

Many people with MS find it difficult to continue working, even in the early years of the disease. Tasks that seemed challenging before MS can become seemingly insurmountable. The unpredictability of MS, both in terms of fluctuation of daily symptoms and unknown levels of future disability, make mapping out a strategic career path virtually impossible. We simply do not know what the future holds around our ability to perform a job. 

I am lucky enough to be able to work from home. I am able to adjust the timing to work more when I feel good and take a quick nap if needed. There are days when I can work a full day, but there are many days when I do not feel productive at all when I sit at the computer and even 15 minutes looking at the screen feels like torture.
I know that as each year has gone on, the problems that I have had in trying to work efficiently seem to get worse. However, it appears that some people who are newly diagnosed or have just had one episode of a clinically-isolated syndrome may already need to adjust their time at work.
Researchers in the Netherlands wanted to look at how MS-related cognitive dysfunction affected work in people who are recently diagnosed with MS. In the
Cognition and Socio-Economics (COGNISEC) study, the group of researchers studied 45 people with MS who had been diagnosed with MS or had a clinically isolated syndrome within the past 2 years and have been on disease-modifying therapy for less than 6 months (or not at all).
Here is what they found:
  • On average, people worked about 25 hours per week, over 3.8 days. 
  • Those people with higher fatigue, lower self-efficacy and higher disability all decreased their working hours within 12 months following diagnosis. 
  • Lower long-term memory scores correlated with a lower number of hours and days worked during the week. 
  • People who scored lower on "focused attention" and "speed of memory" were more likely to say they "wished to work less." 
  • Interestingly, scores on tests assessing depression (Beck Depression Inventory) did not correlate at all with quantity of working hours.
This research shows that cognitive dysfunction negatively impacts the capacity to work, even in the very early stages of MS. It indicates that working memory and long-term memory may counteract fatigue, disability and low self-esteem. When memory is impaired, the person is no longer able to compensate for these issues as well, and these factors may work together to impact work performance.
What does this mean? Let's face it; even jobs that we love can lose some of their luster when we have to negotiate symptoms that add to our physical disability. However, it is important to realize that even early in the disease process we may find things becoming more difficult. While it is tempting to keep pushing ourselves to do more and overcome some of these challenges, it is important to remind ourselves that we may have very real cognitive symptoms related to our MS that are impacting our abilities to work the same way we did in the past.
But don’t let this research get you down. Many people with MS continue working long after their diagnosis. Disease-modifying therapies, new technologies, better symptom management, legal employment protections, and community resources can help you remain in the workforce and education and preparation can be your most powerful tools for success. If you’re struggling to keep up at work, and aren't ready to throw in the towel just yet, contact the National MS Society (1-800-344-4867) to learn more about your options and get connected with employment resources in your area.
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Julie Stachowiak, PhD

Julie is the author of the Multiple Sclerosis Manifesto, the winner of the 2009 ForeWord Book of the Year Award in the Health Category. She is an epidemiologist who is also a person living with MS, Julie has an in-depth understanding about current research and scientific developments around MS. She also has first-hand knowledge of the frustrations and anxiety surrounding the disease, as she had MS for at least 15 years before receiving a diagnosis in 2003 and has had several relapses since her diagnosis.