Work is an important aspect of our lives, not only providing vital income for our families, but offering independence and a sense of accomplishment for the individual. However, a diagnosis of multiple sclerosis (MS) can greatly affect employment and career opportunities due to the unpredictability of the disease.
Even though the nature of how we work is changing towards a more fexible approach, with advances in technology offering remote working, many people with MS still struggle to stay in work.
A diagnosis of MS does not impact skills and experience; but the symptoms caused by MS can vary and fluctuate over days and weeks, and interfere with a person’s ability to work.
As the disease progresses, disability can accumulate, making it more challenging to remain in work.
Impact on working life
Typically, MS is diagnosed in young, active people between the ages of
— prime working years — with potentially decades of employment ahead of them.1
Most people living with MS and their caregivers remain employed. Both say a diagnosis of MS has impacted their working lives.*2 Even in the early stages of MS, ability to work can be markedly affected.3
On average, 7 months after diagnosis people with MS and their caregivers are forced to make changes at work.*2
of people with MS and
caregivers need to give up work completely.*2
*Percentages based only on patients and support partners in Canada and the EU5 countries in the wave II, 2017 survey.
As the disease progresses, increased disability — such as difficulties in walking — imposes a heavy burden on people with MS and on their caregivers.
62% of people with MS, who were not currently employed, said fatigue was the most common symptom that prevented them from working.4
People with MS not in employment think the following adaptations would have enabled them to remain working longer4:
Flexible working hours
Rest during work breaks
Better awareness of MS amongst colleagues
The cost of unemployment
MS can lead to substantial economic losses for society.3 Unemployment levels among people with MS are higher than those in the general population, even at low levels of physical disability.3
The number of people with MS who are able to work decreases rapidly as their disability progresses (as measured by the Expanded Disability Status Scale (EDSS)). Once an EDSS of 9 is reached, only a few people with MS are still able to work.5
Each year, the total annual indirect costs related to productivity loss are approximately
for a person living with MS.
This is almost double for their caregivers —€31,000,6
due to not being able to stay in work and the impact of being a caregiver on their work.
The cost of MS
the average annual cost of MS per person is €40,313, which is made up of direct medical costs, indirect costs, such as loss of productivity at work and informal care costs.6
As MS progresses the total mean annual cost for a person with MS increases:6
for mild disease
for moderate disease
for severe disease
Living with MS can be expensive and without a steady income it can be hard to pay for extra costs, such as7
Help with household activities
There is currently no cure for MS, however, early disease-modifying treatment can significantly reduce disease activity and disability progression
- 1. MS International Federation. What is MS? Available at http://www.msif.org/about-ms/what-is-ms/.
- 2. MS MindSet Survey Results.
- 3. G Giovannoni et al. Brain Health: Time Matters. http://www.msbrainhealth.org/perch/resources/brain-health-time-matters-in-ms-report-mar17-1.pdf. Accessed July 2017.
- 4. MS International Federation: Employment and MS. Available at https://www.msif.org/about-us/advocacy/employment-and-ms/. Accessed June 2017.
- 5. Kobelt, G et al. New insights into the burden and costs of multiple sclerosis in Europe. Multiple Sclerosis Journal. Volume: 23 issue: 8, page(s): 1123-1136 http://journals.sagepub.com/doi/full/10.1177/1352458517694432.
- 6. P Kanavos et al. Towards better outcomes in multiple sclerosis by addressing policy change: The International MultiPlE Sclerosis Study – IMPrESS. http://www.lse.ac.uk/LSEHealthAndSocialCare/research/LSEHealth/MTRG/IMPRESS-Report-March-2016.pdf. Accessed July 2017.
- 7. MS: Enough Make Welfare Make Sense. https://www.mssociety.org.uk/sites/default/files/MS%20Enough%20report_1.pdf. Accessed July 2017.