How to Keep Working
People with multiple sclerosis (MS) have a high risk of stopping work after they’ve been diagnosed, but there are some things that can be done to improve the chances of remaining employed.
A common misperception is that physical disabilities associated with MS are the main reason for unemployment. While it’s true that people with progressive forms of MS have greater difficulty maintaining employment, physical problems are not the main problem for people with relapsing-remitting MS. While opinions vary somewhat about the most important factors contributing to unemployment, overall the main areas causing problems are cognition, fatigue, hand/arm difficulties and personality factors (Julian and colleagues. J Neurol 2008;255:1354-1360).
MS can have an impact on cognition (thinking ability) in several ways. The areas most often affected are how quickly you process information and how well you focus – both of which can affect multi-tasking at work. You may feel you’re thinking more slowly, but it’s important to know that MS doesn’t affect a person’s intelligence or IQ. Tasks just take a little longer than before. So you may have to plan a little more in advance, make lists and establish priorities, and make full use of smart devices.
Fatigue, hand/arm difficulties, bowel/bladder problems and other symptoms can all impact working life (Simmons and colleagues. J Neurol 2010;257:926-936). This underscores the importance of getting the help you need to manage specific symptoms rather than toughing it out or ignoring the problem. Help may also involve asking employers for accommodations in the workplace – such as air conditioning in your workspace, installing ramps or providing more flexible hours. (See the MS Society of Canada’s guides for employers and employees at http://mssociety.ca/en/help/booklets.htm). An accommodation can also involve changing your job description or retraining. For example, physical labour may become increasingly difficult, which may explain in part why some studies have shown that men with MS are more likely to become unemployed than women. A switch to lighter physical work or an inside desk job may prolong your working life (Glad and colleagues. J Neurol Neurosurg Psychiatry 2011;82:78-82).
Personality can also be a factor that can help or harm a person’s ability to keep working. A recent study found that an important trait was sheer persistence – continuing to plug along despite frustration and fatigue (Strober and colleagues. Mult Scler 2012;18:647-653). It isn’t easy. And it isn’t glamorous or much glorified in our society. But it can get the job done.
Starting an MS treatment and staying on therapy also appear to impact employment. Some studies have suggested that you’ll have fewer sick days off work if you take Avonex (Rajagopalan and colleagues. Curr Med Opin Res 2011;27:179-188), while others have suggested that Copaxone is better (Lage and colleagues. Work 2006;27:143-151). These studies raise the question of how much the flu-like symptoms seen with interferons drag you down and make you feel worse.
Feeling well on a medication is clearly important (Krokavcova and colleagues. Disabil Rehabil 2010;32:1742-1748), especially if you think that medication is doing a better job at controlling MS. And three recent studies have looked at whether a bigger gun – Tysabri or Gilenya – has an effect on employment.
A Swedish study surveyed people starting on Tysabri who were receiving full- or part-time sickness benefits (Wickstrom and colleagues. Mult Scler 2012;epublished September 25, 2012). They found that with treatment, people almost doubled the number of hours they could work per week, which was attributed to better disease control with Tysabri, and to people feeling better able to keep working because of their therapy.
Other interesting results were presented at this year’s ECTRIMS (European Committee for Treatment and Research in MS) meeting. German researchers looked at data from the PEARL study of first-line treatments, and from PANGAEA, a long-term study on the safety of the oral drug Gilenya (Ortler and colleagues. ECTRIMS 2012; abstract P302). (Gilenya is a first-line treatment in some countries but not in Canada.) Even though people taking Gilenya had more active MS compared to those taking Copaxone or an interferon, the number of days off work was three times lower in the Gilenya group compared to the other treatment groups. A separate analysis from PANGAEA found that about 90% of people on Gilenya had no relapses, and there was a significant increase in the number of people rated as “normal, not at all ill” during the first nine months of treatment (Ziemssen and colleagues. ECTRIMS 2012; abstract P04.131). So being free of relapses and feeling more normal may have enabled these people to keep working.
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