"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.
I understand that my disease will never truly be understood by many of my friends. How can it be? They have never been in my shoes. In fact, I don't know why it is even important for me to make sure they understand the level of pain and discomfort rheumatoid arthritis can bring me. I guess it is because it is often the strongest force working in my life. I wish it wasn't true, but it is. Rheumatoid arthritis often is on my mind 100 percent of the time. I read about it, I am constantly trying to figure out what my unique body needs, and I am willing to do about anything within my reach to keep this thing in control and sometimes I feel like I have succeeded in trying everything, but the magic formula just isn't that easy to find. I think it would be similar if I was working on my master's degree, having a baby, or planning a wedding. Those things would be the central part of my life and of course I would want my friends to understand the fullness of what I was experiencing. Listening to someone's stories of pain isn't quite as exciting, but it does deserve listening to and most importantly acknowledging.
Before I had symptoms of rheumatoid arthritis, I have to admit I was a little impatient with people that claimed to be in pain. I often thought that if they just ate better, exercised more, or tried this one special supplement (which by the way this same friend always tells me about), they would get better. It just isn't that simple. Since my diagnosis, I have learned to listen better to people that complain about pain. It is real. With rheumatoid arthritis is it real and it can be bad. We are already dealing with a lot, but then to hear that "we look good" when you yourself can plainly see the pain in your own eyes when you look in the mirror or suggestions to try "eating more cherries" does not come off as supportive, but instead it comes off as demeaning and intrusive. I can't think of one rheumatoid arthritis friend I have met through my blogging experiences who hasn't tried thing after thing to make the pain and stiffness go away. What makes a person who has never experienced this feel they have the magic knowledge that will save us?
I can't change people and their comments, but I can change who I am. I can now show more sympathy to the gal that is walking ahead of me at a turtles pace. In fact, I often want to say, "I know what you are feeling. Some days are hard, aren't they?"
I can now have more patience for the guy who struggles to bend down to pick up the money he dropped in line. I can now stop and listen to family and friends who need to share their own pains. It isn't about giving advice back, but just listening. I have come to a place from my own experiences that I have learned to withhold suggestions that aren't asked for because I now realize those suggestions don't help, but instead make me feel that all the hard work I have done is not quite enough. I have learned that we each have to follow the path that feels right for us and the suggestions from others can often only take us off track for a short time rather than motivating us to move ahead forcefully.
Friends and family do care about us when we are facing chronic pain, there is no doubt about that. They want to help us in ways that only their personality can give. I know that. I want to take a deep breath when I hear their suggestions and comments and accept that their words are coming from a loving place. I do try to do that. But with a few people, it seems that the comments and suggestions are more constant than the listening and understanding. It is then that I have to hold the nails back and make sure I don't start clawing.
Published On: July 11, 2011