“I Have Multiple Sclerosis” – Who to Tell and How to Say It





National Multiple Sclerosis Society – Disclosing Your Multiple Sclerosis to Others

 

When talking to others about your Multiple Sclerosis, keep in mind that one size doesn’t fit all. Since you may have very different reasons for disclosing to different people in your life, your explanation needs to be tailored to the situation and the particular person. And because no two people are alike, no two responses to your disclosure are likely to be the same.


 




 

 

Family members

Disclosing your MS to those closest to you — particularly those who know you well enough to know when something is wrong anyway — is the best way to rally the support you need to begin the coping process.

 

 

Friends

There’s no need to tell everyone at once, so start with those friends with whom you feel most comfortable. With time, you’ll be able to decide how much you want to share and with whom you want to share it.

 

 

 

People You are Dating

talkingHow soon to tell… how much to tell… what to expect… are common concerns for anyone who is “out there” trying to meet someone. While there’s no need to tell all on a first date, remember that secrets don’t lay a very good foundation for a lasting relationship — so think about disclosing at the point that you would like to know important information about the other person.

 

 

Employers and colleagues

Disclosure in the workplace can have a significant impact on your job security, employment options, and career path. Before disclosing your MS in the workplace, learn about your rights under the Americans with Disabilities Act (ADA) and think carefully through the pros and cons of sharing this personal information.




 

Questions to Ask Yourself

Here are some important things to ask yourself as you talk about your Multiple Sclerosis with other people. Asking yourself these questions ahead of time will help you figure out the best way to present the information to each person, and will help you prepare for the various kinds of responses you are likely to get.

Why do you want the person to know?

To share personal information with an important person in your life? To explain recent physical or emotional changes? To rally assistance and support?

 What do you want this person to understand about your MS?

What MS is? How it affects you? How changeable and unpredictable it is? What you’re doing to treat it? That it’s not contagious? That it’s not fatal? That it’s not something else?

What is the best way to deliver the information?

In a face-to-face conversation? With a pamphlet that the person can take and read? By reading a book about Multiple Sclerosis together? By watching an online program together? By attending an education meeting together?

What kind of response do you expect you get?

Shocked silence? Sadness and tears? Fear? Lots of questions? Stories about other people with Multiple Sclerosis? Suggestions for what you should do? Offers of assistance? A hug?

Things to Think About

Shock and distress may make it difficult for some people to respond — so be prepared to give them time to deal with the news.
You may need to provide comfort and reassurance at just the time that you are needing comfort and reassurance yourself.
When people don’t know what to say, they may say nothing at all — so be careful not to misinterpret silence as not caring.
Most people will take their cue from you — so be ready to let them know whether you want to talk about your Multiple Sclerosis, if you’re willing to answer questions, and if you need something from them.

READ MORE:

NATIONAL MULTIPLE SCLEROSIS SOCIETY – DISCLOSING YOUR MS TO OTHERS

 

SHOULD I TELL?

KNOWING YOUR RIGHTS

WORKPLACE OPTIONS

Brittany Haugen, Education Manager

National Multiple Sclerosis Society Greater Delaware Valley Chapter