Many people with MS retire from work early after the diagnosis of the disease, which leads to financial, emotional and social challenges.
Why is it happening? What are the barriers that make it difficult to stay in the workplace, and what can be done to deal with them, succeed in continuing to work and be productive? An article in two parts.
Multiple sclerosis usually erupts in young adults, precisely at the peak career age. 1 Although most of those diagnosed with multiple sclerosis are working and/or studying full-time at the time of diagnosis, about 40% retire from work in the first three years after receiving the diagnosis, and about 80% retire within 10 years. 2
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Early retirement
The early retirement from work due to illness can lead not only to financial harm, but also to harm to personal identity and opportunities for social interaction and social support. Furthermore, staying in the world of work despite the illness can help with physical strength, mental health and maintaining the quality of life. 3
Early retirement from the world of work is considered one of the main problems faced by people with multiple sclerosis, that is why it is so important to understand what the barriers are to staying in the workplace, and how to deal with them. The reasons for leaving the workplace among people with multiple sclerosis are mostly related to the symptoms of the disease, or to the work environment, as will be expanded later. However, studies show that people with multiple sclerosis tend to leave the workplace even before the appearance of significant physical or cognitive limitations, of the kind that make work impossible. 3-4 Understanding the barriers to staying in the world of work and knowing ways to deal with them can help restore the self-confidence needed to stay in the work environment for a long time.
What are the barriers that cause retirement from the work environment?
The main barriers to staying in the world of work are related to the symptoms of the disease themselves, mainly physical difficulties, emotional difficulties and cognitive difficulties. 3-4
Barriers related to physical difficulties
Adapting the work environment to deal with fatigue at work:
Significant fatigue is the main physical difficulty experienced by most people with multiple sclerosis (92%).
- The journey to the workplace can itself cause significant fatigue that may affect the rest of the working day.
- You can consider alternative options for reaching the workplace such as public transportation or organized transportation, rather than independent driving which can be significantly tiring.
- Also, in order to deal with fatigue in the workplace, it is important to develop strategies to conserve energy. These strategies concern both the work environment and the work process itself.
- More information about multiple sclerosis and fatigue can be found in the following article FATIGUE AND MULTIPLE SCLEROSIS: WHAT IS IT AND HOW DO YOU DEAL WITH IT? SYMPTOM MANAGEMENT.
- In terms of the work environment, it is advisable to adjust the work position, in cooperation with the direct managers, so that it is possible to sit in an accessible place, close to the elevator, or a place that does not require a lot of walking into the building.
- It is desirable that the work place be located near the bathroom, the kitchenette and other important places such as the location of the printer, the location of the work places of co-workers, etc.
- The goal is not to waste energy on unnecessary walking that will weigh you down later when doing the work itself.
- It is also possible to prepare in advance aids for less good days such as leaving an extra walking stick at work.
Fatigue during the work itself :
- It is advisable to plan the work day in advance, including defined breaks for rest.
- It’s a good idea to make a list of tasks for each day, and break them down into sub-tasks in smaller time periods, so that you can rest between tasks.
- Awareness of personal strengths, and learning the feeling of fatigue at a given moment is extremely important.
- There is no point in reaching a state of extreme fatigue that could damage the work products, so it is better to take more breaks, and perhaps even stop the work day in case severe fatigue is felt.
- Also, in cases of extreme fatigue, drug therapy can also be used. To do this, contact the medical professional.
Consultation with an ergonomics expert :
- In order to deal with additional physical difficulties during the working day, such as pain, sensation problems, muscle stiffness, etc., you can consult an ergonomics expert who can help adjust the work position.
- Ergonomic fit can help ease prolonged sitting, and the ability to concentrate for a long time. These adjustments include choosing a suitable chair and its orientation, orientation of the computer screen, keyboard and mouse, and organizing other work aids in a more accessible and convenient way.
Moving to a hybrid work model :
The labor market has changed a lot following the corona epidemic. Many workplaces today are open to the possibility of a hybrid work model, where part of the work is done at the workplace, and the other part from the employee’s home. This model can be ideal for people with multiple sclerosis, so you can work at times that match the degree of fatigue, and you can take rest breaks during the more difficult times. The rest of the work can be completed later in the day or in the evening.
Barriers related to emotional difficulties :
People with multiple sclerosis often experience anxiety and low mood. In the context of the world of work, anxieties can significantly affect the way of working, the self-confidence in being able to function properly at work, and the very fact of remaining in the work framework for a long time. The main fear reported by people with MS is criticism from management or co-workers. Reducing anxiety and negative feelings can help increase self-confidence, more successful performance at work, and satisfaction with work results.
Openness and communication:
sometimes hiding the disease and its effects from the employer or co-workers, and the attempt to force the effects of the disease can lead to a decrease in self-confidence, thus even intensifying the anxieties and fears. The best way to deal with the anxieties and fears is by talking and being open with the employers and co-workers. It is useful to share with them the personal situation, the specific needs that can help to perform the work in the best way, and to agree on conducting mutual feedback calls more frequently.
Know your rights!
Employers do not always understand or know what the implications of dealing with the disease are. In order to reach mutual satisfaction, it is useful to get to know the rights in the workplace and their practical meaning concerning the employer. Should disagreements or dissatisfaction arise, this knowledge can greatly alleviate feelings of tension.
Processing fears with a professional:
Sometimes there is a situation where the workplace is patient and accommodating, and indeed accepts the personal needs of the employee with multiple sclerosis, but the fears are still disturbing and affect work performance.
Sometimes you even feel feelings from the immediate environment that expect the person with multiple sclerosis to retire from work due to the disease. In such cases, it is recommended that professionals such as psychologists, social workers, therapists, etc. work on the issue, and get tools to reduce fears and anxieties, and to deal with the immediate environment so that you can have support staying at work, instead of encouraging early retirement.
Acquiring strategies for more effective work :
Some people experience a significant decrease in self-confidence regarding their ability to continue functioning in the workplace as before. Self-confidence can be damaged after attempts to continue the work routine without making any adjustments, thus making mistakes and/or achieving less good performance. Acquiring more efficient work habits, and strategies to make the work easier, can significantly affect the way the work is done, help prevent mistakes at work, and lead to more successful work products. As a result, the fears and anxieties about doing the work will also decrease, and the mood can improve. It is useful to acquire these habits and strategies at an initial stage as much as possible, even if you do not feel any cognitive changes, in order to assimilate the habits and use of the strategies and make the use automatic.
Part 2 of this article will explain more about this topic. In the following article, barriers and solutions related to cognitive difficulties will be presented, which may have a great impact when deliberating about early retirement from the workplace.
The author:
Dr. Noa Givon Shaham, PhD, an occupational therapist specializing in geriatrics
Sources:
- Howard et al. Neurol Clin, 2016; 34:919–939.
2. Multiple Sclerosis International Federation. Survey on employment and MS; 2010.
3. Bishop & Rumrill. Work, 2015; 52:725-734.
4. Jellie et al. Disability Rehabilitation, 2014; 36:1594-1599
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Thanks for the interesting article.