To Tell or Not To Tell

One of the first decisions you will make about your MS is who you will tell about your diagnosis. This is big news and you shouldn’t have to go it alone. 

Sharing your news will be important to coping with your diagnosis.  An MS diagnosis is such a personal event, that it’s not unusual for patients to keep their diagnosis a secret from everyone but their closest friends or family members for a long time—even years. While there are a lot of reasons to keep it a secret, you are going to need the support of friends, family members, and colleagues.  Before you can enlist their support, you’re going to have to tell them what you are dealing with.

You may be relieved and disappointed.  Most of the time, sharing your news will be a relief.  You will find that people are eager to listen and help out.  However, some people really shine when the chips are down and others don’t.  Serious events in our lives have a way of telling us a lot about the character of the people around us.  Sharing you news about your MS will tell you who you can really count on—and who you can’t. It’s hard not to be surprised and disappointed when someone lets us down, but you will find the support you need one way or another, so keep the faith and press on.

Don’t talk about it until you are ready to.  If you need some time to absorb the news before you tell anyone, that’s OK.  Take that time and wait to talk to people until you have the energy and information to answer their questions. Also, keep in mind that you may have major swings in your feelings about whether or not to share your news.  This is normal.  It’s best to think about it for a while before you act.  Since each of us has our own set of circumstances and considerations, we have to decide what is best for ourselves.

Think about who and how you tell your news.  Here are a few general thoughts to be aware of before you share your news:

  • You look healthy.  If your symptoms are not obvious to others, people will have a hard time understanding that you are dealing with a serious diagnosis.  They might react to your news by saying, “but you look so good.”  Sure, that’s nice to hear, but it doesn’t minimize the significance of your diagnosis. 
  • People say stupid things.  People simply don’t know what to say when you give them bad news, so they improvise and the results can be distressing.  Expect this to happen.  Try to ignore it.  There are two extremes.  At one end of the spectrum, there is the “oh my God!” reaction where someone gets very worked up and then you are in the awkward position of having to calm them down and reassure THEM about your diagnosis.  On the other extreme, there is the “It’s all going to be OK” response that feels like you’re being dismissed and not taken seriously.  In between, there are the people who try to come up with reasons why this has happened to you (as if you were at fault), as well as the people who protest that “it’s not fair, you don’t deserve it” (as if life were fair.) Everyone will react a little differently.
  • They will want to know how they can help or what they should do next.  Get a sense of what you would like from them before you tell them—even if all you want is for them to respect your privacy by not telling anyone else.    Don’t be afraid to say “I need you to do XYZ for me.”
  • There will be a lot of questions.  Since most people don’t know much about MS, they will probably ask some tough questions right off the bat.  Their first questions will be a lot like yours. [See “The Basics”] so it may be helpful to know the answers you want to give before you dive into revealing your diagnosis. You can also refer them to TurnFirst to learn more.
  • They can’t relate.  While you struggle with both the emotional and physical aspects of the disease, your struggle may be hard for others to see and relate too.  When people can’t relate to your feelings and experience, it can make you feel more isolated.  This can be especially true for younger people who are less likely to have faced health hardships and therefore may be less able to empathize and help you cope.
  • They may surprise you—which can be bad or good.  They may not respond the way you expect or hope they will.  You might want to give some thought to what you expect before you talk to them and prepare yourself for several different reactions.
  • They’ll have their own feelings and fears to contend withGive them some time to cope. They may feel scared, helpless and/or frustrated on your behalf—or for themselves if they depend on you.  In some instances, it is important to recognize that your news will be very tough on them too and they may need you to reassure them. They may need some extra support too, so be prepared that they may feel a need to talk to other friends/family members about it.  Make sure they know who you have told and who you haven’t.  You can also refer them to special resources where they can get help and information.
  • There is always a grapevine.  Once you tell someone, your secret is out.  If you are at all concerned about your diagnosis being public information, choose your confidants carefully.  Even if you tell your mother, she may feel she needs to lean on her best friend for support, who then shares it with her husband. . . you get the idea.  When word does get out, try not to mistake it for malice. It’s human nature; people talk.  They share secrets.  Eventually, word gets around.  Again, people are usually well-meaning and they care.   But it can be a little painful to hear that a friend heard your news from a stranger.  It may not be worth the energy to try to keep it under wraps.  You might just consider telling the people closest to you and then letting the chips fall where they may.

For a more in-depth discussion of the issues and considerations with sharing your news, please look in our "Special Issues" section.  The articles on “Sharing Your News” include insights on talking with your spouse/partner, children, employer/colleagues, and strangers. 

Also join the TurnFirst Community to share your experiences and thoughts with others.