Friday, October 12, 2012

Why is it harder to work with MS?

Julie Stachowiak, PhD

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.


  1. Honestly, it's the inability to nap at 1p everyday. I wake up at 5a and by 1p I feel like I am about to drop. And I am in the "only one episode, diagnosed two years ago" category. Makes me sad sometimes.

    1. I'm glad i read this...because that is me!i lost my job as a certifed nursing assistant. that was my life and now i'm unable to do it..because i get so tired..and i haven't been able to finde another makes me very depressed.

  2. After multiple moves due to my husband's career I have not worked since early-2003, which was about the same time the random symptoms started. Now in my third year post-diagnosis, newly divorced, and uprooted again, there's no way I can return to my job as a special education teacher. I "look" fine, but I'm dealing with the ms, severe depression, vision, hearing, balance, and fatigue. Education has changed so much in the past ten years I would never be able to cognitively handle the demands. I can't decide what to order off a menu, let alone make snap decisions in the classroom. It is sad.

  3. I've had severe cognitive trouble at work, and retired last year. I have been denied federal disability and am trying to appeal. I don't think I could handle any type of secretarial work any more, but it's all I know. I'm applying for positions with less stress, but they are few. I don't even know how to go about finding a factory job. Everything is computerized and I'd have to learn at least one new system no matter what job I get from factory worker to grocery store cashier. It took me a year to learn the new Word. I've had a year off, and I have slowed down considerably. What do I do when I'm stuck in the limbo of waiting appeal for disability and finding a job I can honestly do.

  4. I do have lesions covering almost entire parts of my brain. Sometimes I get too tired, especially post evening I look and sound like a drunked. I have memory problems & attention issues. But I don't take any excuse from official or most personal work. I am a software engineer and I am working for 10+ hours everyday. I am highly thankful to God for giving me a highest confidence level that helps me to overcome or atleast bear all my MS symptoms.

  5. I used to have a high level of stress job that required multi-tasking and taking over for the boss when he and she were not around. I slowed down with the MS and was constantly asked if I had that job for them yet. I was easily side tracked and then I simply forgot. I retired. Now I am doing community volunteer work. And I still forget the most simple things. Like names of people that I have known for at least 3 years. People laugh at me when I say something like, "Oh I have been here before." When of course I have been there before. Why does the wrong words come out of my mouth. Even doing community volunteer work has lowered my self esteem since it is obvious that it is a struggle for me. I feel like people don't respect. And those who do feel sorry for me. Not a good feeling.

  6. This comment has been removed by the author.

  7. exercise, preferably in a pool...if there is a Y near you. You should not have been denied by SS, that is wrong on so many levels, good luck.

  8. In my experience meeting people with MS, there seems to be several different kinds of MS, some with many lesions, others with very few.

    What I've noticed is that people with lots of lesions have mainly paresthesias and some fatigue. People with a few lesions have more problems - cognitive problems, physical disability, tremor. They can even have lesions in the spine, which don't affect your ability to think, but severely affect your ability to walk. I have lesions in my brainstem, cerebellum, cerebrum, upper and lower spine. I really got the sampler platter when it came to MS symptoms - mild aphasia, tremor, problems walking, nystagmus, paresthesias, and cognitive problems that are too weird to explain.

    Yet I still work. What I've found is that I have a low and a high period to every day. Around 3:00 or 4:00 I really get tired, and I can nod off at my desk if I'm not careful. Fortunately I can go and nap for a few minutes and get out of that fatigue loop. If you can arrange your workday to avoid your down period, (work night shift, or very early day shift) that's one way to continue working. The other is to discuss the need for a small nap with your employer.

    I really dread the prospect of looking for disability, as I'm in Texas!