Dr. Laurie discusses the everyday challenges of "spoonies," or those who live with chronic illnesses every day.
It's RA Awareness month, and I’ve been reading blogs and talking with my patients and my friends about living with RA.
It is always humbling to me to recognize, again, how much I don’t know about what living with a chronic illness like RA feels like on a minute by minute basis.
The decisions one has to make, the losses and limitations which just keep on coming, and the struggle to re-frame, keep positive or at least somewhat hopeful. I am awed by the courage and pluck (I don’t often get the chance to use that word!) that the people I listen to and care about regularly show.
How do they do it??
This is what I’ve been told, and I want to pass it on.
They need us – the ones without the illness – to show up. To pay attention and offer our acceptance. Acknowledge what living with the illness costs. Not to forget or take their good days and high-energy moments for granted. To encourage and coach them to do what must be done – doctors, insurance, pharmacy, exercise, good food, sleep. They need us to maintain our sense of humor, our hopefulness and zest, and to be in their corner no matter what.
Yes, it is a tall order. Yes, it means we who are the encouragers also have a big job to do. We can’t take our lives for granted either. Part of our job is to be willing often to walk in someone else’s shoes, or sit in their place.
When they were eating in a diner one day, her friend asked what it was like to be inside her body – a body that now is often sick, fatigued, and always unpredictable. Christine had an inspiration – she gave her friend a handful of spoons, and then proceeded to illustrate how those spoons get "spent" or taken away.
Many of you may have read Christine Miserandino’s post titled: "Spoon Theory." It is the story of the illustration she created for her best friend to help her experience what it is like to live with a chronic illness. When they were eating in a diner one day, her friend asked what it was like to be inside her body – a body that now is often sick, fatigued, and always unpredictable. Christine had an inspiration – she gave her friend a handful of spoons, and then proceeded to illustrate how those spoons get "spent" or taken away. It was a graphic way for her friend to feel the worry of "not enough energy." Christine describes it beautifully, and I encourage you to read her words.
What she sums up for those of us who seem to live with an endless supply of spoons, is to be mindful. This RA awareness month take a few minutes to think what it is like not to be able to thoughtlessly open a jar, or park where you want because it’s no big deal to walk. To consider those high heeled shoes as a potential fashion choice. Not to worry if you take a half day at work people might start to think you’re a wimp or not reliable. To take handfuls of medication, or agitate over whether you should or when you’ll have to again.
The gift we can give our loved ones is to work at “getting it” and help them deal – every day, and when necessary, every hour.
Then offer your energy to walk for the cure, advocate for better insurance coverage, and be tireless, as you can afford to be in getting rid of this disease for good.
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