Be a good girl. Conceal. Don’t feel. Don’t let them knowLet it go…

Tonight we’re watching Frozen.  We saw it at the movies a few months ago, but now we have the DVD so we can pause, rewind, sing along and enjoy it in all its glory.

My 13 year old son is thrilled!  He’s just going to go ahead and do his homework in the other room.

If you haven’t already seen it, don’t worry, I’m not going to spoil it for you.  I’m sure you’ve heard the theme song ‘Let it go’ and maybe even heard the catch phrase lyrics:

‘Conceal. Don’t feel.  Don’t let them know.’

Those words caught my attention.  Sitting there in the darkened movie theatre I had that jarring feeling deep in my chest…at once both hollow and overwhelmed with emotion.  That’s the feeling I get when my heart has made a connection but my mind hasn’t quite caught up yet.

But the time the chorus rolled around it was starting to solidify in my mind.

Don’t let them in, don’t let them see
Be the good girl
You always had to be
Conceal. Don’t feel.
Don’t let them know.

Suddenly I was thinking about life with Rheumatoid Arthritis, and how often I conceal what I am feeling.  How often I try to keep it to myself.  How I don’t want to let people know how much pain I might be in, because I don’t want to draw attention to myself in the wrong way. I don’t want pity.  And even more so, I don’t want people to THINK that I want pity!

So I keep silent.  Be the good girl.

But then there’s a conflict. A dilemma.  I DO want people to understand .

I want to raise awareness of what this disease truly is, and what it can do to your life. That ‘arthritis’ is not always just mild aches and pains.  That there are many different kinds of arthritis, and that there are many degrees of severity.  That it can be excruciating, mind numbing, constant pain that nothing can totally alleviate.  That ‘arthritis’ may be part of a serious, systemic disease that can, and will, take your life and your body apart, piece by piece.

I want people to understand that the word ‘arthritis’ should not be used in general conversation to describe any ache or pain in the body. The word ‘arthritis’ should not be trivialized in this way.

I want people to understand that ‘arthritis’ may be part of a disease process and needs to be diagnosed by a doctor.  That ‘rheumatoid arthritis’ or ‘inflammatory arthritis’ or ‘autoimmune arthritis’ is something very different to the wear and tear arthritis that grandma has.

So in order for people to understand this, I need to explain it to them.  I can’t conceal it.  I have to let them know.  Or how else can they possibly learn about RA and the damage it causes?  How can I possibly be upset that no one understands if I won’t explain?

So I have to try.  But how to get the message across?

If you describe the pain in milder, general terms, people don’t take you seriously.  Its arthritis, right?  Everybody gets it.  It’s not that bad.

If you tell the truth and explain that some days the pain gets to a 9 out of 10, and that most days it’s at least a 6 or 7.  That you take morphine and/or oxycodone every day to manage the pain, they look at you like you’re crazy.  Like you must be incredibly weak.  Or that you’re just a drug addict.  Or that you must be lying.  Because…its arthritis!  Everyone gets it. It’s not that bad.

So I keep trying.  I try to take the opportunity to explain things like uveitis.  That my eyes are red and sore because my disease, rheumatoid arthritis, is attacking my eyes.  Or that I really do need to be careful around sick people, because I take several immune suppressing drugs.  Last winter I wound up with pneumonia, so I am not being a hypochondriac.  I am taking sensible precautions.  And of course I keep telling people that my arthritis is nothing like the arthritis that their grandma has.

Some people listen.  Some are intrigued.  Some do actually get it.

Most don’t.  Most people have their own problems and don’t have time for their misconceptions to be debunked.

But I will keep trying to explain.  Quietly, calmly.  Not knocking people over the head with it, nor harping on about it endlessly.  But answering questions fully and honestly.

And for those that don’t want to know, well, I’ll just let it go.