Invisible Does Not Equal Imaginary

This week’s posts have developed a bit of a theme. Health is not a virtue, pain shouldn’t be hidden in silence.  Here’s another corollary of this line of thought.

When it comes to your health–invisible experiences are NOT imaginary.

There is a wonderful online movement based on the work of Christine Miserandino of the ButYouDon’tLookSick Foundation.  In an effort to explain the challenge of living with fibromyalgia, she wrote an essay that she called “The Spoon Theory.”  Essentially, the theory suggests that we each have a finite number of emotional & energetic “spoons” to get through our day.  Some days, it takes every single spoon we’ve got to get out of bed.  Other days we have to ration our spoons to participate in something important.

The reality behind the spoon theory, and the #spoonie movement that has grown out of it, is that a majority of the most painful and debilitating illnesses that we face (Crohn’s, lupus, depression, diabetes, cancer, MS, anxiety, & RA–just to name a few) don’t have any visible signs.  With the right makeup, clothes, and effort, a person with intense physical & emotional pain can sometimes look “just fine.”  Looking just fine doesn’t mean that we feel just fine.  In fact, that “just fine” face may hide a world of pain and suffering.

Since we live in a society where we are supposed to ignore our pain, many of us have bought into the story that we should feel fine.  That our pain is a sign of our weakness.  That if we were strong enough, courageous enough, hard-working enough, virtuous enough, we would be able to do all the things that a healthy person can do, in the same time that a healthy person could do it.  In short, we have bought into the story that maybe our invisible pain isn’t real pain.  We begin to feel that maybe our invisible pain is “just in our heads” or a sign of our failure.

This makes me so angry.  Unless you have  a broken bone with a cast, a wheelchair or another dramatic physical marker like hair loss, most illnesses don’t have a visible indicator.  There isn’t a pain rating scale flashing above your head.  Fatigue and depression don’t show on your face.  Almost all pain and suffering is invisible.  AND it is real.

People who are struggling to get through a “normal” day because of pain or other invisible health issues do not need to have their struggle questioned or discounted.  That kind of behavior is healthy privilege in action. So, let me state this clearly.

Invisible suffering is real suffering.

Instead of questioning the validity of people’s pain, let’s work on creating support systems that help them move through pain in healthy ways.

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