Treating fear...

As humans, it is difficult not to associate crushing chest pain with death, especially if you are nauseous and sweating.  And the leading cause of death for women—more than all cancers combined—is heart disease.

Part of the reason for this is that women's symptoms of a heart attack are often different from men.  We can experience nausea, backache, jaw pain, sweating, stomach pain, and shortness of breath.  Those are often symptoms experienced by those with dysautonomia.  So, it is understandable when you have chest pain, that you think and fear heart attack.

In the support groups on Facebook, it is rather common to see posts about folk who have chest pain, go to the ER and are sent home.  The chest pain we experience is neurological, not cardiac disease.  And there is little to be done with it.  But fear, especially the fear of death, drives one to seek help.  Often, as I have seen posted, again and again and again.

It occurred to me that really what they are seeking treatment for is the fear more than the pain.  I mean, after all, dysautonomia and its frequently co-morbid conditions means you live a life of pain in your chronic illness.

A couple of months ago, I was stricken with terrible searing pain in my right shoulder, radiating down my arm.  It lasted about 4-5 days (I don't remember exactly).  It was crippling pain and a very large part of me wanted to race to the hospital and demand that someone do something.  Only the very logical part of me knew that it was nerve pain and would, eventually go away.  And I know that painkillers slow my already sluggish innards.  The pain eventually left, but I fought that urge to seek help many times during that flare.

I have never sought out the ER when I have chest pain.  I did call an ambulance once when I had tachycardia, but not when it is just the crushing, overwhelming pain.  Even though I cognitively know what's happening, it is difficult to not give into the fear of imminent demise.  It is difficult to separate myself from those thoughts and emotions and remain patient.

I know that ERs about about life-saving medicine, but I actually believe that helping someone through their fear, their sense of hopelessness and isolation, especially when borne from physical malady, is important.  Given the millions who face life with chronic illness, why shouldn't hospitals have staff in ERs trained and dedicated to supporting those folk who are facing a crisis of spirit, who are desperately in need of care and support to endure one more minute...hour...day?

With dysautonomia, practically anyone who comes into an ER could use the physical support of an IV bag of saline (we often suffer from low blood volume and low sodium and dehydration).  And during that infusion, the calm and compassionate voice of a caregiver who will listen to your fears and the ails of your body and acknowledge your battle could go a long way toward helping the patient gird her loins and remain in the battle another day.

I frankly find the selfies in the support groups disturbing.  The ones of IVs seem a bit ridiculous, since surely a millions of folk have had IVs.  And the selfies of blood pressure screens seem equally ridiculous.  We all have crappy numbers.  Why not just write the numbers?  Why not use words instead of silly photos.

But maybe it is that we, as a society, do not encourage the speaking of vulnerability or the acknowledgement of fear.  We are to "buck up" and "move on."  We are all out of the practice of using words to speak our fear.

It's funny.  Even strangers will take the time to comfort a fearful child.  Folk will go out of their way to assuage a child's fears and help her calm down.  Time is no factor.  The measure of success is the cessation of tears and the child's willingness to take up the mantle of life again.  Why is it important, even honorable and celebrated, to comfort the fear of a child but not an adult?

I lay in bed last night, struggling to breathe from the crushing pain in my chest.  I wanted monitors slapped on my body.  I wanted relief.  I wanted someone to be with me so that I would not die.  But I did not call 911 or race myself over to Parkview.  I might have, though, if we lived in a world where adults could be comforted in their fear, their whole being treated for the ravages of life with chronic illness.  Sadly, we do not.