Being in employment, particularly in paid employment, is a very satisfying part of human life. Working gives you the opportunity to interact with others and develop socially and psychologically as well as to fulfill needs, achieve goals and gain recognition from society. Working not only contributes to your own and/or your family’s support but it also contributes to your own self-esteem, and feelings of self-worth. Having MS, whether as newly diagnosed or of long standing, impacts on many aspects of your life including your role in the workplace.
Until recently, people diagnosed with MS were often told by well-meaning family and friends—and even by their doctors—that they should leave their jobs and stay home and rest. The unfortunate message was that people with MS could no longer manage the demands of work or make meaningful contributions in their chosen fields.
Times have changed. Over time there have been a number of advances both in the management of MS and in societal attitudes towards individuals with disabilities. A range of medications and practical strategies exist to help people manage their symptoms and treatments are now available to reduce the number, frequency and severity of exacerbations. Most importantly, the attitudes of employers and employees are undergoing a change.
The best way to begin assessing your current job situation is to look at the kind of work you do in relation to the type(s) of MS symptoms you are experiencing. If your job is a very physical one, you might be particularly concerned about symptoms such as fatigue or problems with walking or balance that might interfere with your job performance. However, if you have a desk job that primarily requires a lot of planning and problem-solving skills, you will be concerned less about your physical capabilities and might be more concerned about any changes in your thinking, memory or concentration. In other words, some people’s jobs are compromised by their MS symptoms in different ways or much more quickly or directly than for others. Your decisions about the work you do in your job will depend on the ways in which your job responsibilities are affected by your particular symptoms. People whose job performance is consistently affected from the outset will need to begin thinking about adjustments or changes sooner than those whose symptoms do not interfere with job performance right now.
Some people who have missed many days of work or have spent considerable time looking for an explanation for their strange and puzzling symptoms, choose to share the new diagnosis as soon as possible with colleagues and friends at work.
However, if you have not already disclosed, it may be worth taking some time to consider the possible benefits and consequences of making your diagnosis public. Once you have given out the information, you cannot take it back.
On the positive side, you may get additional support from your employer and colleagues once they have a better understanding of what you have been experiencing. Once you have disclosed your condition, it is a lot easier to request changes to your work conditions to enhance your job performance. The potentially negative consequences of disclosure may be equally compelling, however. Employers and colleagues may have stereotypes about disability that they will not share with you. For example, they may assume that you will be unable to perform on the job, thereby forcing them to do more work or causing them to lose money. They may also be concerned that you will become unreliable by frequently needing to take time off at short notice. Your employer may assume that you will not want further training or promotions.
You may find that people react to you differently, focusing on your health status rather than your talents and abilities. Given the variability and unpredictability of MS symptoms from one day to another, you may even find that people question your condition or wonder why you have some difficulty even on days when “you look so good”.
In some circumstances, you may not have a choice about whether to disclose your diagnosis. You may have a legal obligation to disclose. For example, this obligation may be based on health and safety requirements) or the terms of your employment agreement.
It may arise if your symptoms mean that you are unable to perform the inherent requirements of your job, or if your symptoms create a risk to your safety or the safety of others in the course of your work. There may also be other circumstances in which you have an obligation to disclose.
Even if there is no legal obligation to disclose, if you currently have visible symptoms that might be confusing to others or could be misinterpreted as alcohol or drug abuse (e.g. unsteady walking, balance problems or slurred speech), you might choose to let others know your diagnosis even if you do not need any conditions changed at this time.
Disclosing your MS, whenever you decide to do it, will require a lot of public education on your part. Be prepared to explain the visible and invisible symptoms of the disease and the ways in which they can come and go in an unpredictable way. Since most people have learned to think of an illness as something that gets better once it is treated, many will have difficulty understanding the unpredictability and long-term nature of MS.
It is important to let people know that most of the time you will be able to perform in your job as normal, but there will be times when you need their extra understanding and tolerance. It is important to let people know that you are not drunk at work nor on drugs.
MS Society UK – Work, MS and you. Includes how to tell your employer.