Sharing your MS Diagnosis

Patient Expert

The months or years of mystery have been solved. In many ways, you feel relief at having been given the diagnosis at last. MS...multiple forevermore part of your life.

Now one of your immediate concerns is telling family and friends. Who should you tell? When and how? Your health status is a very personal issue and there is no one correct formula for sharing the news.

Naturally, the people most effected...your spouse, children, parents or anyone who shares your home...should be told. It's a good idea to have some knowledge of the basic facts of MS so you can answer their first questions. Encourage them to educate themselves.

At the time of my diagnosis, I had three teenaged children. When I gave them the news, the first fact I revealed was that MS is not contagious and they cannot "catch" it. Young children and teenagers need to have those fears addressed at the very start. I assured them that MS is rarely fatal and that I could be expected to live a long life. I told them that their own odds for developing MS were still small. Whew! With that out of the way, I was able to talk about my specific symptoms, the medication I had chosen, and what effect it may have on our relationship.

When I told my mother I tried to keep it light and positive, but it broke her heart, as I knew it would. She took the "Why you?" stance while I championed the "Why not me?" side. Interestingly, when you share your MS diagnosis, you may find yourself in the position of comforter rather than comforted. You should prepare yourself for that possibility and understand it for what it is -- that someone cares very deeply about you. I spread the news slowly and let the family grapevine do its work.

It is not necessary to give specific health details to employers and co-workers unless it directly effects them. Though it didn't yet have a name, MS had already made its presence known at my place of employment. If your employer has been unaware of any health problems and it does not directly effect your work, I would suggest caution before sharing your diagnosis.

When I first began appearing in public with a cane, I was put off by comments and questions about the reason. I usually responded that I had problems with my legs or joked that my cane was simply a fashion statement. I had not yet internalized my condition and had trouble saying "MS" to strangers or acquaintances. It was still something other people had. A little time took care of that. Before too long I was responding with the simple statement that I have MS. If someone has a genuine, polite interest I am happy to educate them on the subject.

You should not feel obligated to inform everyone in your life, nor should you feel it is necessary to keep your MS hidden. It is your decision to share or not but be aware that, as with all things, once you tell someone, it will be repeated.

Who you tell, when and how are choices you must make for yourself. There is no great urgency, so take your time and trust your instincts.

Through it all, remember that there is more to you than MS.