Who Should I tell About My MS?

NOTE: I do not have a medical degree of any sort. The following information is my personal description of the disease as I understand it from what I’ve been told by doctors and from my own personal research. Please feel free to email me at mattalleng@yahoo.com if you have any questions. 


When I was first diagnosed with Multiple Sclerosis I noticed that a lot of other people on online MS forums were asking the question “who should I tell“? It seemed as though people were afraid of what their friends and loved ones would think. Now I didn’t go through the typical emotional roller coaster that most newly diagnosed people go through (that’s not to say I didn’t go on a roller coaster ride of emotions, I just didn’t go on the same ride that most everyone else did) but I did know one thing: I needed to give myself some time to come to terms with my diagnosis before I made a decision to tell someone that I had MS because I didn’t want to make a decision based on compulsive emotion, I wanted it to be based off of logic, I wanted to be rational.

So before you even start to worry about who you should tell you should worry about whether or not your ready to tell anyone to begin with. Now everyone’s situation is different and everyone handles this kind of news differently as well. Some people might need to tell someone right away so they can receive the support they need to get through the initial shock of being diagnosed with Multiple Sclerosis. Some people might not need this but for those of you who do I recommend the following.

The First One’s to Tell

You just found out that you have MS. If you have been dealing with obvious symptoms for a while and there have been certain people helping you and staying by your side through all your doctors visits leading up to your diagnosis, tell them first. Chances are if they were by your side for the unknown they will be by your side for you now. These are the people who will most likely give you the emotional support you may or may not need. These are the people you want to surround yourself with because they will help you get through the tough times and find balance in your life. If not too many (or no one) knows that you have been having health problems then I would start with who ever you are closest to. Your parents, your significant other, your best friend, etc.

Don’t be Afraid to Tell Them

You can’t be afraid of what people will think or how they will react because if you can show your own strength by coming forward and explaining what is going on with your health then that will help them be strong for you in return, it will eliminate some of their fear. If they react poorly, they run away, or anything of that sort, then it will be painful for you, it will, I have been through it myself so I know, but it’s times like these that allow you to see people’s true colors so it’s important to keep that in mind if you should have to deal with such a situation. More then likely sharing your MS diagnosis with someone will show you just what kind of person they really are, it will show you how strong they are, how much they care about you, and just how much they are willing to do for you.

Just don’t jump to a harsh judgment too fast! Sometimes people’s initial reaction will not be the greatest but that’s just because they might not know how to handle the shock just like you yourself might not know how to handle the initial shock. Give them time and see how they are after they have had some time to let things soak in. Maybe their initial reaction was poor because they care about you so much and are afraid for you. People deal with fear and hurt in all sorts of different ways. You have to be patient and see how these people adjust because if you immediate shun them from your life out of hurt and anger then you might loose a friend or family member that you didn’t have to.

The Second One’s to Tell

Now again, everyone’s situation is a little different so this exact example may not apply directly to you. At this point you have told a few of your closest loved ones about your diagnosis. Your hopefully a little bit more comfortable with what is going on now so talking about this with a few more people should be a little easier. You might and probably will still feel a little uncomfortable with it all but that’s normal in fact, a lot of people never get to a point where they are comfortable talking about their diagnosis but I encourage everyone to be as open as possible because it will ultimately help you, your friends, your family, and other people with MS.

So who do you tell next? I think at this point you should tell your family members and what ever friends you talk to often enough that it’s appropriate. One thing I do not recommend is posting a bunch of wall post on facebook announcing to everyone that you have MS. That is not the right way to tell people in my opinion and frankly, you might come off like you are looking for sympathy. Now is a time for strength, a time for you to be as strong as you have ever been, doing such a thing will not support you efforts to keep strong. If your going to tell someone, tell them one on one or at least face to face in a group and don’t be afraid to answer people’s questions, remember, it’s good to be open about this!

Is there Anyone I Shouldn’t Tell?

This is a trick question if you ask me… As far as your personal life is concerned there may or may not be people who shouldn’t know about this for whatever reasons. That is going to be up to you to determine whether or not that someone needs to know about your diagnosis.

Me personally, I don’t hesitate to tell anyone if it comes up. I am not ashamed or embarrassed to have MS in any way shape or form. Why should I be? We don’t feel ashamed when we catch a cold or the flu and MS is no different, it’s an illness, we didn’t ask for MS nor did any choices we made in our lifestyles result in Multiple Sclerosis. Just like the cold or the flu, MS just happend, nothing to be ashamed of, so if it gets brought up somehow I have no problem telling anyone and explaining to them about the disease. Now not everyone is like me, I know I am way more open about my experience then most people but I say all this to hopefully encourage more people to be confident with themselves because no matter what state your in, you are stronger then the average person because you have to deal with all the mess life throws at everyone plus Multiple Sclerosis on top of that.

Now, that said, we move on to Employers… This is where it gets a little tricky. Technically an employer can’t fire you or refuse to hire you because of your disability, that would be what we call discrimination…. However, we all know this is not a perfect world and we all know that most people judge a book by it’s cover. It’s because of this that some people choose not to disclose their diagnosis with their employers but once again this will ultimately be up to you. I can’t say that I know the laws regarding this manor inside and out so I suggest you do some research of your own and talk to some people about it before you make any decisions


I want to end on the matter of dating because this also seems to be a major worry in the world of MS especially among us younger patients. A lot of people worry that they will not be able to find someone do to having MS… I have to admit, I did at first think this myself… How could anyone actually want to spend their life with someone whom they might have to take care of for a good amount of time? Someone who can’t keep up with other people our age? Who’s life may always be constantly changing? Well this is all foolish thinking, because first of all, you will more then likely get control of your disease and live a very normal life going years without any major issues. Most people won’t even notice your disability and it probably won’t get in the way of your relationships so don’t be afraid of the dating thing. It might be a bit intimidating at first and you might have to wait a while till you get ahold of your life but once things settle you will be back in the game just like before!

Here’s the real question though, do you tell your date about your MS? You will get lots of different answers to this online but here is mine: Yes. Telling your date about your disability will show that you have confidence and strength. It will show that it is really no big deal to you because you own your MS rather then your MS owning you. By keeping it a secret you are (in my opinion) letting your MS own you, don’t do that, you have MS but MS doesn’t have you. Now I wouldn’t go announcing that you have MS on your first date, but maybe the second or third (assuming the first went well) go ahead and just casually throw it out there.

If things are going well your date deserves to know what they could be getting into for the long run. If they stick around then you know they really do love you for you and you really do know that they will be the kind of significant other you can depend on to be there for you. If you wait till months or years after a relationship has developed you won’t know if they are the kind of person who is going to bail on you when times get tough until… Well…. Times get tough and they bail on you. That is going to hurt a lot worse then not getting a third or fourth date…

My Ending Note

I leave you with this: Don’t be afraid of what people will think, as long as they can see that you are confident that’s all that will matter. Be open! I know not everyone can be totally open and that is completely fine, but I do in fact encourage you to be as open as you can because it will help everyone around you including yourself. It’s always hard to tell the first few people but the more people you tell the easier it get’s to tell people so again, don’t be afraid, it will be ok!




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