To Tell or Not to Tell
Deciding whether or not to tell your employee that you have multiple sclerosis is a big decision. On the one hand, disclosure may garner you some much-needed support. On the other hand, you may confront some of the biases and misunderstandings that often surround MS and that could adversely (and unfairly) affect your career.
Common reasons that individuals with MS decide to disclose their illness to an employer include the following:
Their symptoms are no longer invisible. They may be having problems with walking or muscle weakness and they can no longer hide their condition.
Their symptoms are causing them to miss a lot of work and they're concerned about their job performance.
They are interested in asking for accommodations at work that will allow them to perform better.
Since employers are increasingly exposed to chronic illness in the workplace, some have begun to offer flexible work schedules that address the needs of employees who have chronic conditions. In fact, one-third of U.S. companies offer options for increasing flexibility in work schedules.
Still, disclosure is a very personal issue and it's important to sit down and make a list of the pros and cons before making a decision. Be clear about your reasons for deciding to tell or not to tell. Consult a therapist, another professional, or a trusted friend to make sure your reasons are sound and logical and not based completely on emotions such as fear.
The Multiple Sclerosis International Federation (MSIF) has developed the Working Together Initiative to help educate and guide employers when it comes to dealing with MS-related issues in the workplace. They've also put together a list of advantages and disadvantages of telling your employer to help you make the right decision.
Advantages of Disclosure
Telling your employer of your diagnosis can bring peace of mind. Many people with MS report that “hiding is more stressful than telling.” Disclosure also makes it easier, if the need arises, to discuss any workplace adaptations that might be necessary.
Being able to deal with people more honestly may also be an incentive to share your diagnosis. Having “cleared the air,” you will have a better understanding of others' reactions to the fact that you have MS and of how you are likely to be perceived and treated by colleagues.
Sharing your diagnosis also releases you from the worry that a past employer or reference might inadvertently reveal the fact that you have a disability. And if a medical exam is required, your apprehension will be reduced knowing that the employer, insurance company, and other relevant parties are aware of your MS before the examination takes place.
Essential
An ongoing nationwide poll conducted by the NMSS found that 43 percent of adults who have had MS for twelve years or more retain employment. In some cases adjustments by you or your employer may have to be made, but flexibility and determination seem to be an important mix in maintaining a healthy and productive work life.
Disclosure also makes it easier to educate your colleagues regarding the true nature of the disease and allows you to discuss with your employer any future changes in your condition.
Fear of Disclosure
Fear of being discriminated against and missing out on opportunities such as a promotion or training venture often prevent people from disclosing their MS diagnosis. In fact, fear makes up most of the reasons why people are uncomfortable sharing this private matter in the workplace. People fear rejection from colleagues, or they fear losing their jobs — or not being offered a job at all.
Tips for Disclosure
If you do decide to share your diagnosis, approach the conversation with your boss (or whoever is appropriate, including a human resources manager) with as much professionalism as you do any work-related discussion. Talk specifics. Know what you'd like to get out of the conversation ahead of time, such as a more flexible schedule, a parking space closer to the door, or a work-from-home option. It's good to walk in with a solution in mind. Let your employer know you've considered the challenges and have planned strategies for working more effectively, making up for your absences, and accommodating other situations.
If you disclose your diagnosis (technically, you're not required to), be prepared to explain what MS is and how it affects you as an individual. Make sure to let your boss know that MS is variable by nature.
It's important to be familiar with discrimination laws before approaching someone at your company. Again, knowledge is power in this situation, and it's imperative to know your rights. It probably will not be necessary to recite them during your discussion, but you'll feel more confident knowing what the laws are and understanding what may constitute a reasonable request.
Essential
You might consider hiring a job coach (also called a career coach) to help guide you through the process of disclosure and to help you adjust to the workplace with a chronic illness. Look for a coach who has experience working with people who have chronic illnesses. Job coaches most often counsel by phone, so it's a convenient way to enlist some help. Visit
