DOES ANYONE HEAR ME?  DOES ANYONE UNDERSTAND?

This is traveling around Facebook and it is sooooooo true.  Our daughter shared this.  Yes, she is in constant pain.  Pain no one can see.  She looks fine.  She is not.  She fakes the smile when asked, “How are you?” 

I belong to a group page for RLS (Restless Legs Syndrome).  We are tired.  RLS steals our sleep.  We take medicine.  The medicine has side effects.  We do not answer honestly when asked, “How are you?”

People, with depression, fibromyalgia, pain, and a very long list of “invisible” illnesses and those with chronic illnesses, never answer honestly.

Why?

I could say, because we have become a “me” society and your pain does not matter to me.  I could say, because the person asking does not want an honest answer because they would have to respond.  I could --- and sadly, there is some truth to both of these --

I could, but the real answer is we fake it because we are afraid the person asking will not hear us.  The person asking might listen, but rarely do they hear and understand.

My experience from non-RLS people:

            “I have not slept for a week.” gets a reply of, “Have you tried taking a shower before bed?  That works for me.  You said you took a nap maybe that is the problem.”

            “My legs go crazy when I sit or sleep.” still gets this reply from some doctors, “Have you tried exercise and do not drink wine.”

            “Once when my legs were going really crazy (before I took medication), I thought about taking a butcher knife up the back of my leg.  I thought that was the only thing that would help.” gets the reply, “You need help.”  (And they did not mean medicine for my leg!)

My experience from fellow RLS group members:

            “I have not slept for a week.” gets the reply, “Tell me about it.  I am so tired my mind will not work.”  (Sleep deprivation is real!  Many who suffer from RLS are fired because they are too tired to function.)

            “My legs go crazy when I sit or sleep.” gets the reply, “Have you tried Mirapex?  How is your iron level?”  (Like most diseases, RLS is different for each of us.  What works for one seems to set the next persons legs into constant motion.  We try to help each other.)

            “Once I thought about taking a butcher knife up the back of my leg.” gets the reply, “I sure know that feeling.  Honestly, if I thought it would help…..”

The difference is fellow RLS people are going through the same thing.  They hear each other.  They understand.

I have been very fortunate.  My hubby has been great.  He knows I will fidget through movies and concerts.  He knows I might stand up when we have company because I cannot sit still any longer.  He sleeps in another room because it is the only way either of us will get sleep.  He worries about me.  He hears me.  He understands. 

I have been very fortunate.  When my mother had RLS, there was no medicine.  There was not even a name for it.  It was “all in her head.”  I have taken medicine since 2006 and it has made a big difference.  It works --- the majority of the time.  It also has side effects, one of which is messing with my weight, so never expect me to be any smaller than I am now.  My doctor gives me additional medication for when we travel.  She hears me.  My doctor understands. 

And that is the point I am trying to make:  If you are going to ask, listen, hear and understand.  Sometimes, a person is fine and they will say so.  Sometimes, a person is not fine and they should be able to say that also.  If you are going to ask someone how they feel, allow them to be honest, hear what they say, and, when you really listen, you will hear and you will understand.

No one with RLS, depression, fibromyalgia, pain, and a very long list of neither “invisible” illnesses nor those with other chronic illnesses should have to hide how they are feeling.

We never know what other people are going through physically, emotionally, or mentally, but if you are going to ask someone how they feel, please allow them to be honest. 

Reading back over this, it sounds like a lecture and I do not mean it that way.  It is written out of concern for all who fake being well.