How Much Should You Say About Your MS at Work?

How to Deal with MS in the Workplace

How Much Should You Say About Your MS at Work?

By Jeff Martella Published at December 4 Views 13,419 Comments 3 Likes 4

Multiple sclerosis (MS) is not as disabling as people who are unfamiliar with it presume. But separating fact from fallacy takes time and a lot of patience. As you live with the realities of your own diagnosis and the adjustments that come with it, others may notice your limitations and questions may surface. So when should you disclose your MS to colleagues or friends, and how much should you tell them?

If you're like me, you've had to respond to the following statement: “I would never have guessed you have multiple sclerosis because you look so good.” Yes, I've heard that a few times just as you probably have.

The key to developing a response you feel comfortable with to this question and others about your condition is practice or role-playing. You may be thinking, “Practice … are you serious?” Yes I am. If you don't practice or role-play what your response will be, it will make the conversation even more awkward. So, plan ahead to put people at ease, especially the ones you work with every day.

If you like, practice with a family member or close friend. Use a script of some sort at first to organize your thoughts and ensure you're ready. Be honest. As you talk, remember that having MS is not your fault. Keep in mind that whomever you are disclosing this to will still be your colleague or friend or boss afterward.

Risky Business

There will be a level of discomfort and possibly risk with your disclosure, so be prepared with the facts. Fortunately for those living in the U.S., the Americans with Disabilities Act (ADA) offers legal protection, so read up on your rights. Also, seek professional advice before disclosing any information. And don't forget your local MS Chapter; they're eager to help.

While the ADA does provide a degree of protection, it does not cover employers that have less than 15 employees. Neither does it eliminate ignorance or discrimination.

If your MS has not yet imposed any limitations on you in the workplace and you do not appear disabled, you might want to postpone full disclosure. If you feel confident that the disclosure will not be used against you, informing your boss and coworkers might be the right choice. Consider your decision carefully. You'd be surprised by the changes in relationships and workload that sometimes come from being so honest. We all know the stresses that come from working in a “high-stress” environment. The last thing you need is to make things worse.

My colleagues have comforted me on numerous occasions because I disclosed my condition to them. I've even found coworkers who have MS too. What a relief it was to discuss my challenges with them, and how good it was to know I could be a support to them as they went through their own challenges. It took away the stress of having to appear healthy all the time when I was feeling down or challenged with my own symptoms. Again, role-playing will prepare you for discussions with coworkers when the time is right.

When It’s Time to Tell the Boss

If MS is beginning to negatively affect your job performance, you're probably feeling pressure to tell your employer about it right away. Without this disclosure, it will be impossible to request extended periods of rest, flex-time, accessible office space, or computer software to enhance your productivity. Be aware that full disclosure is not required. Simply telling them that you have a “medical condition” is enough. I encourage this to avoid being stereotyped, as people with chronic illnesses often are. This is a personal choice that should be considered carefully, based on trust, professional etiquette, job security, and other issues that pertain to your specific workplace.

Once you've made the decision to disclose your condition to your employer, don't forget to rehearse or “role-play” as I mentioned earlier. Practicing with someone experienced in the business world can enable you to prepare what you're going to say and how you're going to say it before you face the awkward pressure of the moment.

Tips for Talking about MS

A few ground rules to keep in mind:

  • Keep the conversation professional, only discussing your diagnosis as is relevant to your job performance.
  • Be brief and non-apologetic. Remember, it's not your fault you have MS. By maintaining a positive, confident attitude, you will discourage any feelings of pity.
  • Offer relevant literature or other resources to educate your employer about your condition.
  • Do not mention the ADA unless your employer is unwilling to discuss your situation (rare, but possible). If necessary, a formal complaint may be filed with the Equal Employment Opportunity Commission (EEOC), but only as a last resort.

Finally, remember that it took you awhile to adjust to your diagnosis, so it may also take your employer some time to adjust to your disclosure. If you experience an inappropriate or discriminatory response, try to be patient and use the guidelines and resources mentioned earlier. Following a short period of adjustment, you might be pleasantly surprised. Still, prepare yourself mentally for either a positive or negative outcome. Not every story has a happy ending.

Try to work with your employer to find a “win-win” solution that addresses both your needs and your employer’s concerns. Offer a workable plan. And if you’re nervous, remember that they're probably just as tense as you are.

Help is always available!

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