Joe Landson authors this guest post on the chasm between patient experiences and the people who need to understand them.
We suffer through many devastating symptoms, but today I’m only thinking of one. It’s perhaps the most devastating effect of this illness, while not actually being a symptom at all.
It’s the sensation of being surrounded by idiots – the feeling that we have described our symptoms over and over, documented them, even proposed peer-reviewed literature-based explanations for them, only to hear the response: “So… you feel tired?” On orthostatic intolerance: “So, you feel dizzy?” On irritable bowel: “So, you have a tummyache?” It’s such fun I could go on, but I’ll stop there.
This non-symptom that probably all of us experience has led to the distinct impression that only other patients and caregivers get it, that we must cling to each other to keep from losing it completely. Indeed, our cliquishness has prompted many psychiatrists and social scientists to theorize that we suffer from mass hysteria. (Of course that’s impossible; we’re much too socially isolated to have mass anything.)
Of course, clinicians and government health officials must sympathize with our plight, because they have the mirror image of this condition. With a group of us in a room, they apparently experience the unshakable sensation of being surrounded by catastrophizing hypochondriacs. At least they act like they are, based on referral patterns, research funding levels, and non-adherence to the FACA. It’s the best explanation I can think of for how we’re treated – regardless of whatever sympathetic lip service we receive in meetings and conferences.
And so we float past each other, health workers and patients & advocates; trapped in our respective knowledge bubbles.
The problem, of course, is not limited to us. There has long been a chasm between how patients experience an illness on one hand, and how medical professionals define and treat it on the other. It’s a recognized problem that several efforts try to address. One of these efforts is patient-centered outcomes research, pursued by the Food & Drug Administration (FDA), amongst others.
Towards this goal, the FDA revised their guidelines for ME/CFS treatment research. The way I read the FDA’s instructions is this: Don’t have a validated outcome? Make one up. Make up anything, validate it statistically, and show that your proposed intervention moves the outcome score upwards on a graph. Show that the intervention is otherwise safe (to the patient and the graph), and we’ll strongly consider approving it. I hope I’m misreading it, but that’s how I see it, and it does not bode well for serious research. On the other hand, it may get a treatment approved in our lifetimes. Time will tell.
I have other doubts. Is patient-centered research really the best way to fill the chasm between the illness we have, and the one others (don’t) see? Probably some medical professionals equate patient-centered anything to putting the patients in charge of the asylum. (Given some of the doctors we’ve met, wouldn’t this be an improvement anyway?) For me, the phrase patient-centered research recalls Count Rugen (the six-fingered man) testing his suction-based torture device on Westley and asking, “And remember, this is for posterity so be honest. How do you feel?” (What could be more patient-centered than that?)
Speaking of doctors we’ve met, I will never forget the Veterans Affairs rheumatologist calmly explaining to me that while he treated fibromyalgia, which was real because it had a pressure point test, he could not treat chronic fatigue syndrome, which was just a form depression. Interestingly, he made this pronouncement shortly before his colleagues dropped the pressure point diagnostic test for fibromyalgia, and replaced it with a revised definition that sounds an awful lot like a functional disorder. Reality comes and goes, doesn’t it?
In Brain on Fire: My Month of Madness, Susannah Cahalan describes her experience with NMDA Receptor Autoimmune Encephalitis (AE). Its symptoms are utterly indistinguishable from psychosis or schizophrenia; brain scans show nothing. Moreover, doctors’ approach to the illness is a self-fulfilling prophecy. If treated as a psychiatric disorder, AE gets worse and becomes permanent or fatal. If treated as the autoimmune disease it is, AE may ameliorate and even remit to a full recovery, as it did for Cahalan. She acknowledges she was lucky, and that society really has no firm idea how many are unlucky, given a vague psychiatric label, and left to rot or die.
AE may or may not have specific medical answers for us. However the situation is absolutely the same. If health care providers continue to treat us as if we have belief issues, then their own belief will self-fulfill. Our condition will effectively become permanent, and more of us will succumb to paranoia and despair.
Of course, correcting doctors’ beliefs will not suddenly make us well. The best it might do, in the short term, is end the graded exercise and other “treatment” imposed by Count Rugen Peter White and others.
Our beliefs must change, too. Not about our illness per se: Rather, we have start believing that no matter how few or poorly funded, folks genuinely are trying to help us. There is no conspiracy; instead, there is a giant chasm in medical knowledge that has swallowed us up, along with other diseases, too.
And I have to stop being so snarky. Tomorrow.