What to say and do to help a friend or loved one who has Multiple Sclerosis (Part One)

I have talked a lot about what NOT to say when someone you know has Multiple Sclerosis.  So let me take the opportunity to discuss things in the positive.  What is actually helpful to say or do when the person you care about has a chronic disease like MS? 

1.  Just Listen:  It seems easy doesn't it?  But sometimes it isn't so easy.  We humans are geared to want to provide advice and solutions.  We think we are not caring enough if we don't have an answer for every problem.  There are certainly times when advice is warranted but much of the time the other person just wants to talk without being told a list of what to do.  Sometimes it helps so much if the person we choose to talk to allows us the chance to vent.

2.  Allow for the sharing of "negative" feelings:  When you have to cope with a serious illness such as MS, it is both normal and human to feel angry, frustrated, frightened, and even despair.  It does great harm for others to tell us to be "positive" all the time.  This makes it emotionally unsafe to share genuine feelings.  What is so helpful is for someone to validate our emotions by saying, "Yes you have the right to feel angry or sad about this.  Anyone in your shoes would feel like this."  So often we doubt our right to feel our own feelings.  We may end up feeling more isolated and alone when we feel that we cannot share our emotions safely and without judgment.  Having a friend or loved one who will accept us during our bleak times is critical for coping with this disease.

3.  Give empathy and not sympathy:  These two words are in no way similar.  Empathy is when you choose to walk *with* another in spirit.  Sympathy is when you are looking down upon another.  I can tell you that most people who have a chronic illness or disease actively resent sympathy or pity.  Empathy, on the other hand, is almost always welcomed.  Empathy is saying in essence, "I cannot begin to imagine all that you are going through but please help me to understand.  Tell me about your experience." The opposite of this is sympathy which says," I feel sorry for you.  I feel better about my life because I am not you."  Sympathy leaves the other person in the dust.  Empathy says that you are going to stick around for the long haul. 

4.  Ask "How are you doing?" and mean it:  It is something usually said without any meaning or reflection to inquire about how someone is doing.  But for those of us who suffer from MS, it is nice when we are asked this question and the other person is open to receiving a genuine answer.  It is so helpful to find someone who will be okay with our more detailed response instead of a simple but sometimes dishonest, "fine." 

5.  Talk about normal things:  Sometimes a conversation is halted when I tell someone for the first time that I have MS.  All of a sudden the whole focus becomes talking about the disease.  I am more than happy to talk about it for awhile but when I feel the other person is walking on eggshells around me, I feel sad about the loss of normal conversation.  Just because I have MS doesn't mean that my whole life revolves around it.  I still love to discuss politics and the latest movies and even the weather.