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Disclosing Your Multiple Sclerosis in the Workplace

Who should you tell about your MS at work?


Updated November 15, 2011

Honestly, there is very little advice that I can give on this topic, as in the past I have disclosed my multiple sclerosis (MS) at the wrong times to the wrong people and kept it hidden from people that could have been very helpful and sympathetic. Now I have solved my problem by telling everyone that I meet about my MS (and working from home).

Recognizing that this is not a practical option for many people, I am including a section from my book, The Multiple Sclerosis Manifesto: Action to Take, Principles to Live By. In this excerpt, I don’t tell you what to do about workplace disclosure, but I do give you things to think about when you are deciding for yourself what the best strategy is.

Working out of the house is kind of a weird situation, when you think about it. People working full-time often spend more time with the people at their workplace than they do with their spouses or children – certainly during the week. For many valid reasons, many people with MS do not disclose their status to these people that they see every Monday through Friday. However, not mentioning your MS doesn’t make it go away – in fact, people who choose not to tell anyone are faced with the additional stress of hiding your MS symptoms and living with a big secret. On the other hand, once you disclose, people are watching you more closely to see how the MS is impacting you, including your work. Each person must figure out what they will do in their specific situation and it is best to think this through before you act.

Questions to Ask Yourself Before Telling People at Work You Have MS

Why do I want to disclose my MS? Just take the time to think about the answer to this question. Maybe you just are tired of having a secret. Maybe you are feeling that specific symptoms are interfering with your work and you want to explain this to people.

How do I want to disclose my MS? If you are presenting your MS as a problem, consider how you could also offer a solution. Maybe there are some accommodations that might help you do your job better that you would like to suggest to your boss as options. Really think about this. Things like changing your schedule around to avoid being in the office during peak fatigue hours or working from home some days might make a huge difference. You may need the temperature turned down a little in your area (in the case of heat intolerance) or to be moved to a quieter place to work (if you have cognitive dysfunction).

If you are telling coworkers about your MS, think about what it will mean to them if you are able to take on less work some days. Consider things from their point of view, then think about what you would want to hear if you were in their place. In many cases, it would be really helpful to prepare people to do stuff that they usually rely on you for with the least amount of effort. Give them the tools they need to work effectively in your absence.

What is the best/worst/most probable result of disclosing my MS? We all hope for certain responses when we tell people we have MS. In the workplace, it seems like an ideal response would be something along the lines of, “You are so brave for telling us and your exemplary work would never have offered any clue that you had any problems. Of course, we want to do anything to keep you healthy and happy, so please let us know of any accommodations that we can make for you to ensure that you are able to stay with us. Effective immediately, we are cutting your workload by half and giving you a bonus, just for being so wonderful.” You can indulge in a similar little fantasy for awhile, but it is important to really think through all the scenarios that you can imagine. That way, you can respond rationally (rather than emotionally) to anything that happens, increasing your odds for the best possible outcome.

Some Things to Remember Before Disclosing Your MS

Again, before you disclose your MS status, think through the situation. As someone who has a tendency to blurt things out then wonder what the heck just happened, I will tell you that there are some truisms in life, some of which are not pretty, which will apply to your workplace situation:

Information spreads. It just does. You know it as well as I do that people cannot keep secrets. Think about all the “intel” that you have helped travel around the office, whether it was in a gossipy or a matter-of-fact manner. Trust me, your disclosure will not have immunity from this network. Keep this in mind when you tell your office buddy about your MS, your urinary incontinence, your cognitive dysfunction or your occasional use of medical marijuana.

In most situations, a person’s first (or second) thought is “how will this affect me?” Even the nicest person will get here eventually. In a workplace, even friendly relationships often have an element of professional give-and-take or teamwork that may be affected by your inability to perform like you used to.

However, people usually want to do the right thing. They do. You can help them to know what the “right thing” is by straight out telling them, “You know what would really help me is if you…” If you make people feel like they are part of a “team,” they will want to pitch in. Start with things like asking them to condense their 27 daily e-mail messages into one document or “run interference” with a particularly tiring client. Make sure you thank them for their help.

What about disclosing during an interview? The National Multiple Sclerosis Society recommends NOT disclosing MS status in a job interview, suggesting that you focus instead on the job in question and your abilities to perform the necessary work, even if you will eventually need accommodations. Prospective employers are legally not permitted to ask why you need a mobility device.

While I am pretty sure that omitting your MS status from a discussion of your abilities is very sound advice from the NMSS, it's kind of hard for me to imagine leaving the fact that I am living with MS out of a request to "tell me a little about yourself." This is something that you may have to discuss with a couple of friends and loved ones to figure out your approach to different situations.

Bottom Line

I'll be honest, even though it is not a flattering picture – I am happiest working in front of my computer or on a project that is with a small group of people. I find traditional workplaces difficult, partly because my cognitive dysfunction makes it hard for me to quickly switch gears and keep up with multiple conversations. However, I also have a hard time working closely with someone and not sharing things about myself.

I know that if I were in an office setting or another situation that put me in constant contact with people, I would have to really strategize my plan for disclosing my MS. Then I would have to remind myself of my plan often and constantly monitor myself to make sure I was sticking to the strategy. Regardless of what type of person you are, it never hurts to put some thought into how to handle different situations, especially those that may arise in the workplace.

Learn more about your rights in the workplace and workplace relationships:

Working with a Disability

Too Much Information: How Much Should You Share With Your Co-Workers?

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  5. Telling People at Work You Have MS - Disclosing Multiple Sclerosis in the Workplace

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