Having a chronic disease and a job - is that even possible?

Having a chronic disease and a job - is that even possible?

Holding onto a job is a challenge for everyone, let alone if you experience severe fatigue, slowed thinking, or blurred vision. These are all problems MS sufferers can encounter. How can you keep your job if you have a chronic disease?

Multiple Sclerosis (MS) is a chronic, inflammatory disease affecting the central nervous system. About 17,000 people in the Netherlands suffer from MS. Symptoms are very diverse and can be unpredictable. They include fatigue, weakness of the muscles, walking difficulties, and cognitive and emotional changes.

Difficult to keep your job

The first symptoms of MS usually begin between the age of 20 and 40. At this stage in life most people are in the midst of their working career. An alarmingly high number of people with the disease (55%-58%) stop working in the years after being diagnosed, even though they had a job previously. Persons with MS who still have a job may experience difficulties performing their normal work duties, and adapt by cutting back their working hours or responsibilities. A minority are able to keep their jobs without adaptations. This all depends on a mix of factors, such as the workplace, the type and severity of the symptoms, and the individual’s personal situation.

A sketch of situations that may occur:

Workplace- Working as a school teacher may become problematic if you are faced with cognitive problems and difficulties with balance and vision. The question is whether your capabilities still fit your type of job. In some cases the combination may not be feasible and adaptations are needed.
Not all people with MS decide to tell their employer or colleagues that they have the disease. There is no ‘right’ or ‘wrong’ decision here. In most cases, telling their boss will create more understanding for the work challenges people with MS might face. A case study found that reasons for disclosure depended on several factors, including relations with the employer, decreased mobility, and the number of problems at work.

Type and severity of the symptoms- The more physical disabilities, cognitive problems, and fatigue individuals with MS experience, the more likely they are to lose their job. Some symptoms may be overcome if there is a possibility to accommodate for them at work. The employer is an important partner in this respect. Possible accommodations might include improved accessibility to the workplace, being able to work from home, at flexible hours, or the possibility to take more breaks.

Personal situation- Is it financially possible to stop working? This depends on a person’s family situation and whether he or she can fall back on social security. Some may decide to focus on looking after their children or taking care of the home instead of holding on to a paid job. Personal factors also include the way a person copes with difficulties. Lode and colleagues (2010) observed that MS patients who received a disability pension showed more emotion-focused coping strategies (focus on and venting of emotions) and avoidant coping strategies (behavioural disengagement) than was the case with MS patients with a job. These coping strategies are considered dysfunctional in adaptation to a chronic disease.

Don’t give up without a fight

Why is it so important to keep working? Isn’t it in everyone’s best interest for a person with a chronic disease such as MS just to give up work and claim a disability pension? Wouldn’t it save trouble for both the person with a chronic illness and the employer? I understand this may be the better scenario in some cases. Yet I believe this shouldn’t be done without a fight! And ideally we should all join in this fight, as anyone could become that person with a chronic disease.

It is well known that work participation is important from both a personal and a societal point of view. From a personal point of view, having a fitting job offers gives people a feeling of usefulness and satisfaction, enforces social interaction, and leads to financial security. Several studies show that work participation in MS patients is associated with a greater health-related quality of life. From a societal perspective, the costs associated with early retirement are huge and should be avoided.

Promote work participation

To help promote work participation in indivuals with MS, we are currently trying to disentangle which factors are involved and how they interact (MS@Work study). For example, what role do psychological factors play in work participation? We focus on those patients who have lost their jobs or who experience a job-capabilities mismatch, but we also hope to learn from the success stories. Based on this knowledge, valuable information on how to promote work participation can be spread to healthcare professionals, employers, and patients.

Many questions still need to be answered. How can we help people with a chronic disease to stay at work despite their limitations? How can we stimulate employers to see possibilities instead of difficulties? I think it all comes down to one universal truth: accept & adapt. This applies not only to the person with the chronic disease, but to everyone around. We hope to help find the right tools to do just that.