"Cathy, you look so good."  This is a comment I receive from one of my friends every time I am in my worst flare.  It makes me cringe.  My daughter tells me to relax and accept that she is just trying to make me feel better, but in reality it makes me want to scream and I have to resist the urge to claw her eyes out.  That sounds harsh, doesn't it?  It really is, but it is the way I feel when friends tend to ignore the pain I am feeling or want to gloss it over.    

I often read on blogs and websites where sufferers share their frustrations about people not believing they are in as much pain as they describe.  I too feel that frustration.  When I was in my two year flare, I shared with some close friends that I have what is considered "severe rheumatoid arthritis".  They all looked at me in shock and even disbelief.  One of my friends said, "But you don't even use a cane."  I guess a cane means it is more serious.  In reality, a cane would have made my life more comfortable except that the idea of putting any pressure on my wrist and shoulder seemed too much to imagine.  Besides that, I was too stubborn.  

When I heard their comments and saw their faces of disbelief with the information I was sharing, it made me realize that when I shared my experiences with rheumatoid arthritis, they didn't believe them to be quite as severe as what they were.  To them I was not as bad off as I tried to make them believe.  How could I have "severe" rheumatoid arthritis when I was still participating in life? I was still getting my kids to events, still working, still going on with life. 

I often thought, "If they could only see me in the middle of the night when I am cold and my shoulders and fingers are too stiff and sore to lift the blanket over my body, maybe then they would believe that rheumatoid arthritis is as bad as I say.  If they could see me on the mornings when lifting my tea cup to my lips is a slow drawn out process that looks like I am lifting heavy weights, maybe then they would believe what I say."

 I never imagined a blanket or even a tea cup could feel so heavy until I was in a severe flare.  Maybe if they could have seen me driving my car during a bad flare-up they would have believed that the pain and stiffness I described was real.  There were many times in my past when I knew I should not have been driving because my wrists and shoulders were just too stiff, and getting in and out of the car took every ounce of energy I had because the pain of moving was so intense.  But, I kept going.  For me it was not a choice to give up and never leave my home because of the pain.     

What I think many friends and family miss is that although we are in tons of pain, we have learned to control how much we complain about it.  We get tired of hearing ourselves talk about the pain and often choose to focus on other things in our life and those of our friends.  We have learned to hold the cries of pain inside when we are with others.  In private, I don't hesitate at all to yell out loud when I get up and my knees experience pain beyond belief.   We have learned to hide many of our symptoms from others.  I can't tell you how many times I have sat with a group at a restaurant needing to go to the restroom, but waiting until everyone else got up to leave.  If I waited, then everyone would be busy with their own stuff and wouldn't notice me struggling to pull myself up from the table or have to watch me limp away. The embarrassment of what they might say when I was away was too much for me to handle.