No Before Times to Be Had: Part Five
Something that those with chronic illnesses struggle with far more than those with a sudden and acute onset of a disease, is when to even bother to engage with the medical industrial complex.
“Visiting the doctor when you have chronic complex illness is such a minefield. I’ve given up on being understood (pipe dream) & instead only see a doctor if there’s a specific ask that I know is squarely within the doctor’s wheelhouse. Otherwise I figure it out alone. ”
For those unfamiliar with the term “spoons” and “spoonie,” the term originated with Christine Miserandino, a woman with lupus, when she was attempting to explain to someone the challenge of energy depletion for those with chronic illness navigating every day activities. You are given only so many teaspoons to use in a day. Each every day task requires that you use a spoon. If you have six spoons and you have to get out of bed, brush your teeth, brush your hair, get dressed and make a coffee, you have one spoon left for one more task in your day. Someone is a spoonie when their chronic illness drastically limits the amount of energy (spoons) they will have in any given day to accomplish basic tasks that those without illness simply do without any thought.
But “using spoons” is not just relegated to the energy required to manage everyday physical tasks with a chronic illness. Energy is also in short supply for social, emotional and cognitive efforts as well.
There is a tremendous amount of cognitive and emotional energy, or spoons, that all those with chronic illness have to apply each and every time a new symptom arrives or there is a notable change in the existing suite of symptoms.
A well person will usually judge and even gasp in horror when confronted with someone with a chronic illness who has decided not to get symptom x or y checked out by a medical professional.
“Oh my gosh, you really should get that checked out don’t you think? I mean it could be something really serious.”
The minefield that Lauren references above is that the medical industrial complex is designed as a binary system: you are well; you are ill. A chronic illness is an amorphous state of being “unwell-ish” and it is not always possible to identify if a symptom change merits investigation or it simply reflects a minor shift in the overall unwell-ish/well-ish states.
A chronic illness is really more of a quantum space than a mechanistic binary space.
The challenge with shifts in symptoms for a chronic illness is that the medical industrial complex is a hammer and everything is a nail. It will mean that you will go through the usual “differential diagnosis” poking and prodding that will usually rule out the sinister or dangerous causes of such symptoms.
Or, conversely, your symptoms will be minimized and a wait-and-see approach will be applied that may or may not be warranted.
I do not know the percentage breakdown, but I suspect that most people with chronic illness who face worrisome new symptoms find that nothing dangerous is afoot but the symptoms are nonetheless debilitating or painful in some way. Medicine does not have much to offer in this space. Really all that will be on offer, if at all, is various symptom suppression drugs. That is not to say that some folk are indeed waved away from screening that would reveal serious diagnoses and others are dismissed because exhaustive screening does not reveal anything tangible. Again, you can only be either ill or well. That anyone at all with a chronic illness occasionally receives some symptom suppressing options is in itself a kind of failure for a system that does not recognize any complexity in the flow of wellness and illness in living things.
The symptom-suppressing drugs are usually positioned as treating the illness. In fact, the pharmaceutical companies prefer that they be marketed that way. It is why we all believe that anti-depressants treat depression and we do not pay too much attention to all the “off label” uses for these drugs that pretty much confirm there is nothing specific to the drugs themselves that addresses depression.
I am not dismissing the value of suppressing symptoms at all and it is quite honestly the difference between a tolerable and intolerable quality of life for many. What is a problem is that those with chronic illnesses have to figure out for themselves that nothing treats their condition; there are only options for suppressing symptoms. And that journey inevitably involves discovering that all the risks of taking the drug that was supposed to “treat” their illness were never really fully revealed when those drugs were first offered as “treatment.”
Next week in Part Six I will look at our disintegrating medical industrial complex system and then likely the following week we will sew it all together for how someone with a chronic illness can create a decision tree engaging with the medical system; defining the goals when engagement is required; and the spoons that will be needed to navigate it all.
