Fair warning: this is an editorial piece born of my own experiences and passion. It is not rooted in any singular experience but in an education shaped over time and hands on experience all across the world. This is not meant to be reflective of anything other than my own opinion and is not intended to be taken as an application to all.
I hear this particular phrase bandied about so often that I think I would repeat it in a coma. “The best thing you can do is be your own advocate. You deserve xyz care so don’t be shy in asking for it” and dozens of other well meant but poorly understood iterations. And over the years, I find it increasingly tone deaf. Don’t get me wrong. There is absolute truth in this ideal and I strongly believe in self advocacy!
I also have learned over the years as I’ve advocated for myself for the past decade, and now for others the last four plus years, that the ideal and reality often don’t mesh. Advocacy (be it from the patient or other person) is often seen as a negative challenge from practitioners. (I’m speaking broadly here and with an acknowledgment that this will never apply to all but I am speaking to a majority experience.)
So why aren’t we talking about it?
Doctors, PA’s, NP’s, even nurses and RT’s etc., struggle with knowing what to do with patients like us who don’t fit into averages, studied percentages and easily determined criteria. With complicated and rare diseases like MG, there is a sharply increased necessity for contextual understanding and the ability to humbly stay open when faced with a patient whose disease you know nothing of.
Perhaps greater still is the care provider who has a perception of skilled knowledge without truly having skilled knowledge. This in and of itself is just as challenging as those who are ignorant, perhaps even more so. These men and women up and down the hierarchy of patient care are often the most adamant in refusing to listen to a patient, caregiver or advocate presenting concerns about their triage, dismissal or care plan. They insist they are well versed and refuse to listen, regardless of how official your resources or how plainly clear the research that stipulates the opposite.
These providers increasingly show hostility and retributive action against those who do speak up and advocate, putting the patient in a serious dilemma between the gamble of choosing silence and poor care or advocacy and the strong potential of anger, denial, dismissal, discharge, patient abandonment, false psychiatric diagnosis or dangerous mismanagement
There is also a concerning trend in their difficulty in removing bias when the presenting patient “looks fine” and whose complaints aren’t readily found in initial (and correct) testing. Lack of salient, primary knowledge on Myasthenia Gravis or accountability for published works and writings have led to extremely unregulated and often incorrect information which is then clumsily applied to the patient who may or may not be in distress.
When the rubber meets the road, reality screams back that the idealized vs received (reality) attitudes are vastly outnumbered.
So here we have a patient community in MG who doesn’t “show up” in your standard triage and vital checks, nor is easily “seen” and often deviates from standard presentation. Particularly in moments of surgery, exacerbation and emergency, this becomes a point of fear and conflict. This often leads to dismissal from the moment triage begins to ER physician evaluation and can carry through into units with bedside care and respiratory therapy intervention, sometimes at the patient’s most critical moments. And when the dismissal, outright refusal of care, disbelief, inappropriate action, wrong medication and misdiagnosis of psychiatric disease comes into play, as it often does, the patient is left to intercede on their own behalf, IF they are physically able.
Well meant, the advice to simply advocate for oneself and seek or even respectfully demand specific care is rarely well met. In fact, part of the criteria for somatoform (psych) disorders, is a patient who believes their doctor is wrong or insists they are really sick.
And in spite of placed channels for seeking out the care you deserve via charge nurses, the administration and even some hospital advocates, it is almost unheard of to see them over throw or challenge a physician’s treatment course or dismissal. (Again, there are always exceptions but I have spent more time than I can say advocating and talking to nurses, charges, hospital advocates, liaisons, floor managers, and administrators of all stripes of importance, and the intended patient protection morphes into physician protection. Some administrators have even laughingly told me, “good luck getting the doctors to talk to you. They don’t even call us back.”).
In fact, it has become so highly politicized within the hierarchy of medicine that other physicians tend to shy away or refuse altogether from the potential challenge of their peers. Second opinions are often riddled with reticence, refusal to contradict or ineffectual action.
What should be a fail safe for patients can quickly and easily backfire and cause clinicians, nurses, RT’s etc., to antagonistically dig in further. And when the tools structured to give patients a sense of protection against these issues are ignored or used against the patient, the original and well placed intention to advocate can turn into a nightmare.
Emotional trauma from such encounters is not on the decline, even as awareness and patient empowerment is being pushed more and more. Patients often fear seeking out the ER or hospitals and ignore critical symptoms due to previous encounters that left them feeling abandoned, untreated, mistreated, bullied or placed in jeopardy.
My long winded point is this…like many things in life, it’s rarely black and white and often doesn’t work out in real life like it does on paper. The idea is not to discourage advocacy. I highly encourage it. It is part of why I spend so much time trying to share information and educate so you feel more empowered when these moments come. But I wish there was intellectual honesty within our own communities and within medicine about what really goes on within the walls of hospitals and clinics.
Encouraging advocacy without understanding what that demands of the patient or their loved ones and the potential negative consequences does not propel us towards a future where real change and positive movement occurs. It instead keeps us in places of antagonism with those meant to treat us.
And while it can be argued that medical staff mean well but it’s just “too rare to expect them to really understand”, I would say that is not applicable to the conversation. Lack of knowledge or those who mean well does not translate into bias, arrogance, refusal to listen to the patient, their advocate/family member/caregiver, pulling care, refusing care, labeling, assigning psych or drug seeking status without exhaustive proof etc…has nothing whatsoever to do with a disease being rare. It’s an excuse that is harmful. Lack of awareness is readily solved. Refusal to stay humble and learn has no excuse.
Perhaps, instead of offering an entreaty left to ambiguity, (after all, advocacy means a great many different things to many people) we can begin to truly empower by teaching when and how to utilize the placed channels of protection, what to do when advocacy is working against you and how to help others help you. Advocacy, if nothing else, is a honed skill, forged over time and is found more often in offense than defense.
Hundreds of thousands of rare disease and chronically ill patients like ourselves fight the same battles of fear of hospitals and ER’s, negative consequences to standing up for yourself, damaging misdiagnosis and assumptions that can follow you every time you need future care. Far too many stay home instead of accessing help because the help we thought would come doesn’t and so we learn to stay away.
It is my hope that intellectual honesty and seeking positive encounters whenever possible will press in new roads that lead to shattered stigmas and bias that harm clinical trust and individual well being. And maybe, just maybe, we will learn to stop uttering “just advocate for yourself” as though it’s a curative without offering up the strength of walking with one another and learning what it means together.
– Rebekah Dorr
Patient and Advocate
Founder/Admin, Myasthenia Gravis Unmasked