When people ask how I am, I often say, "I’m managing." Acquaintances will say, "Great," and move along.
Friends will say, "Managing well or just barely?" These are the golden people in my life who truly care about me.
I'm holding on
After my husband took his own life 12 years ago, people would ask “How are you?” (I can’t help but think of Lilith in Frasier who would say, “And how does that make you feel?” And Sam would say, “And you get paid for this?”), I absolutely refused to say, “I’m fine.”
I wasn’t fine! My whole life exploded in a moment and I was a wreck.
But I couldn’t find my boat
So I began to say, “I’m holding on.” One day, a golden person at church said, “But what are you holding on to?” I responded that I had a hold of my anchor, but I couldn’t find my boat. . . Read that again.
Do you ever feel this way? Rheumatoid arthritis is insidious. It rarely begins with a big boom. Starting slowly, it builds and builds. Sometimes, it ebbs and flows.
It is not predictable and, many times, you feel like a hostage to your disease. Are you on the boat, on a float, perched on the edge of the noodle, or just clinging to the anchor?
Let your golden friends know the truth
Many times we feel like we have to present a “together” face and smile. While I’ve always been an optimistic person, I think we do ourselves and others a disservice when we try to make others feel better when we feel awful.
If you are new to rheumatoid arthritis, it is perfectly okay and preferable to let your golden friends know the truth.
RA forces us to accept help
Rheumatoid arthritis forces you to accept help. On those days when a victory is getting from the bed to the toilet without falling or having an accident, you have to accept help.
Even if you feel cranky, simply saying thank you blesses the giver. If you allow it, receiving and giving help can be a special moment that improves a friendship.
Make and keep golden friends
As a society, Americans have been raised to be independent and pull ourselves up by our bootstraps.
We have lost the “neighborhood mentality” that was common when I was a child. If someone was hurt or needed something, the neighbors took care of them. I always took my friends with boo-boos to my mom. She would fix them up and we would go back to play. When meals were needed, the church ladies and the babysitting clubs were called.
Many of us no longer know our neighbors beyond waving at them when we drive by. Close-knit communities have been lost. Now we are independent without help. And here comes rheumatoid arthritis.
We will need help on this journey
We no longer know how to ask for help. When I realized there was no arthritis support group in my area, I began to look online. RheumatoidArthritis.net has become my support group.
I have learned to make and keep golden friends who I can help and will help me. I belong to a faith community and they are steadfast and wonderful.
You will need help on this journey. Find golden friends and community support and be honest.
Quiz: What % of our community members are living with irritable bowel syndrome?