I'm wondering how everyone else feels when they are flaring. I know I feel vulnerable. Nothing like struggling to take a shower and brush your teeth to bring us all to the reality that we need help from others sometimes.
I do NOT like feeling vulnerable. Most of us were reared with the idea that we should be responsible for ourselves and be self-reliant. Suddenly finding that it is not always possible to take care of oneself is a very humbling experience. Sometimes I am “okay” with this revelation. Sometimes I am simply filled with fear.
I was reading one of Lene's blogs on “The Seated View” the other day, and my mind started going places it has not been in a very long time. I started thinking about our society...about how we treat the most vulnerable members of our society. Children and the elderly came quickly to mind. We don't have a very good track record with those two groups in the US lately. And then my mind turned to people with chronic illnesses and disabilities. Same situation there. We just are not doing well there, either.
I am not a politician, and politics pretty much turn me off. I'm not trying to get political here. I am talking more about philosophy of life. That being said, it seems to me that we have let the politicians do some things that are harmful to our society as a whole. If a society is judged by how it treats the most vulnerable members, then we are in trouble.
As people with RA, we face a lot of different challenges. One of the biggest, in my mind, is the perception that we are well. We don't look sick. In addition to that we “just” have “arthritis”. Shouldn't we be be able to pop two Aleve and feel great for 24 hours?
I absolutely detest those “arthritis” commercials. People with RA don't have “mild arthritis pain”. I don't know what “mild arthritis pain” is, do you? Recently, I have seen RA referred to as autoimmune rheumatic disease. I think that is a more accurate name for what we have, and it gets rid of the “arthritis” word that seems to so confuse the general public.
Lene often talks about building bridges. What an appropriate theme for 2012. We do need to build bridges. We need to increase understanding, even if it is one person at a time.
I remember feeling so lost when I was first diagnosed. I started to wonder if I was going out of my mind. No one seemed to “get it”, and the doctors didn't “get it” at first either.
The best thing I did for myself during that time was to come to Health Central and talk to people who were in the same situation. You understood me. You supported me.
My RA coping skills have improved over this last year. Still, there are those times when I want to deny that I have RA. I want to do away with the medicine bottles that clutter my kitchen counter. I would love to knock them all over and swoop them into a black hole somewhere with the back of my hand. I dream of being a bird, spreading my wings and flying freely into the sky. Then reality sits in, and I realize I wouldn't get very far without those meds.
My husband and I were visiting relatives during the Christmas break. We were all talking after dinner, and out of the blue one female relative said, “Last time you were here, you were using a cane. You must be doing better.” She didn't say those words with a look of concern on her face, or any compassion in her voice. She was challenging me. I was a bit taken aback. After the initial shock wore off, I said, “Two hours from now I may need my cane again. That is just the way it is.” This time she was speechless. The conversation turned to another topic.
I don't understand family members who choose to think that RA is “ just arthritis”. The important thing for me at this point is this: I don't waste my time trying to explain to people who really don't want to understand. It simply isn't worth the effort.
On the other hand, I am eager to help educate people who really do want to understand. My friends at church are interested in what my life is like from day to day. I am interested in their lives, too. One of my best friends has MS. She listens to me, and I listen to her. We learn a lot from each other, and our other friends in the group learn from us. It's a start.
I visit a particular convenience store most mornings on my way to work. I stop in for caffeine of some variety, and I have come to know the two women who work there rather well. They have seen me struggle to walk on “bad” days. These two ladies have asked me about my situation, and I have explained to them that I have RA.
These two store clerks and I have become my friends. I know the names of their family members, and how their lives are going. They know some things about me, and they are genuinely interested in RA and the challenges it presents. If I miss stopping in before work, they ask if I am okay the next time I see them. If I can't reach something on a shelf, they are right there to help me. We are friends. It's a start.
I am going to be thinking a lot about building bridges as 2012 progresses. We are all in this together. Does anyone have any words of wisdom or experiences regarding bridge building to help us get started in our new year of reaching out to others?
Published On: January 03, 2011