The tragedy of people with multiple sclerosis: 70% stop working ten years after diagnosis
While the employability figures of people with multiple sclerosis (MS) have improved in recent years, the unemployment rate is still 56% in Spain, a figure that confirms a greater risk of exclusion from work for people the disease. With the aim of raising awareness among companies and promoting the professional integration of people with MS, the Multiple Sclerosis Foundation, the Randstad Foundation and the scientific and technological company Merck have launched the project “MS and employment: working with the multiple sclerosis is possible ”, within the framework of a collaboration agreement signed by the three entities.
Most people with MS have their first symptoms before the age of 40, which coincides with the stage of greatest professional achievement. The fear that the disease will negatively influence his ability leads him to hide. This, added to the symptoms of MS itself, means that many times they are forced to leave their jobs because the company does not have the right conditions to continue working. In fact, nearly half of people with MS stop working 3 years after being diagnosed, and 70% do so 10 years after learning they have the disease.
Multiple sclerosis is not, however, incompatible with professional activity. Thanks to advances in treatment, many of those diagnosed can have busy working lives that are as long as everyone else’s. This is the unified message that was sent to the participants of the conference entitled “Talent, diversity and employment: multiple sclerosis, a big unknown in the business world”, organized within the framework of this new collaboration.
On this day, the added value generated by diversity in companies and the important role it plays as a generator of engagement in teams was deepened. In addition, the knowledge of multiple sclerosis and how to integrate it into the business environment were discussed.
Adapting the workplace, the key to your professional integration
Fatigue and cognitive and mobility problems are the main symptoms of multiple sclerosis which can interfere with the development of professional activity. In this sense, according to data from the AprEMde study, in which 61 hospitals and more than 500 people with MS participated and which were included in the “ White Paper on Multiple Sclerosis in Spain 2020 ”, 73 % of people who work Full-time with MS, you need to adapt your job or your responsibilities because of the symptoms of the disease. However, more than half of those polled say that after reporting their diagnosis, the company has not made any adjustments.
The “White Paper on Multiple Sclerosis in Spain 2020” also shows that one in three people with MS has left their job due to symptoms of multiple sclerosis. This is a worrying figure which highlights the need to emphasize the benefits of professional integration and, at the same time, an encouraging figure, since in 2007 2 out of 3 people with MS were in this situation. Other figures that have come to light in the study are that only 1 in 4 respondents indicate that the personnel managers of their company know what the Member State is. On the other hand, 56.1% state that their position was not suitable to be able to continue working.
As Rosa Masriera, Executive Director of the Multiple Sclerosis Foundation, explains at the “Talent, Diversity and Employment” conference, which specifically aims to raise awareness of MS in the workplace, “so that people with MS can continue to work normally, only a certain adaptation is necessary on the part of the companies. Problems of fatigue, mobility or lack of concentration that affect the productivity of these people can be alleviated by introducing measures such as flexible hours, planning breaks, reducing the pace of work and improving accessibility to the place. working “.
In some cases, there are people who, after being diagnosed, cannot continue to practice their profession, because the nature of it does not allow it. In these cases, the Multiple Sclerosis Foundation offers a training and placement service so that people with disabilities can find new employment opportunities. This is the case of Ana Azevedo, diagnosed with MS in 2014, who assured that the Multiple Sclerosis Foundation helped her throughout the job search process, after having had to reorient her professional career and become a computer linguist. .
Raise awareness among businesses and support people with MS
To avoid exclusion from work of people with MS, one of the main objectives of the project “MS and employment: working with multiple sclerosis is possible” is to seek a better understanding of the disease in the workplace. Bringing visibility to multiple sclerosis is essential for people with MS to be understood and valued in business.
According to Ana Polanco, Director of Corporate Affairs at Merck, “Multiple sclerosis is a doubly invisible disease: firstly because there are symptoms that, at first glance, go unnoticed, but also because it is a disease. pathology about which there is still a lot of ignorance, which has repercussions on the quality of life of the people who live with it. This is why we have to do a lot of pedagogy. “
On the other hand, as Rosa Masriera pointed out, “people with MS must be informed of their rights so that they can be defended in the workplace”.
María Viver, Managing Director of the Randstad Foundation, underlined that “people with disabilities have developed capacities that are now highly valued by companies: resilience, teamwork and continuous improvement make them more flexible. The most important thing now is that companies understand that diversity is an asset and that they integrate it into their corporate values. ”
Experts stress the importance for people with chronic diseases such as MS to continue working, as this represents an important path to development and full inclusion in society. In addition, work has positive effects on physical, psychological and emotional well-being, as it improves social recognition, economic independence, professional development, socialization and self-esteem for people with MS.