I do not have any special degrees I can flash to show you my intellectual superiority on this subject. I am simply an expert in this: experience as someone who has suffered with severe mental-illness and a few rare conditions that are still being misdiagnosed/not diagnosed at all in many due to lack of awareness in the medical community. What I suffer isn’t all of me as an identity but such conditions have significant effects on many people and the problems therein deserve to be addressed. It has affected my functioning to varying degrees and has even made me ponder thoughts of not being here anymore. It has been a cage of both wonder and torment. However, from what I’ve gone through I’ve derived not only self-compassion that I once barely had any of, but deep compassion and empathy for others.
In today’s world we are met with ongoing crises, all of which vary across different geographical areas. We are continually being faced with the uncertainty of our own existence and that of others. Mass chaos, suffering, calamity, confusion, and mortality. So what is it we all do share? Our humanity.
It is through our humanity that we can foster understanding and compassion for others that are different from us. We will never, neurologically, be able to fully understand another person’s perspective but we can all work toward getting as close as possible to this through deep discussion and most importantly, listening. There is a difference between hearing and listening. You have probably encountered many people in your life who could hear what you said yet did not fully grasp or come to terms with the weight of what you were saying. We also have to grasp that even with our personal suffering with a condition it may not be the exact same as another individual who also has it. There are too many variables that go into how humans respond and react to difficult situations (1) but it is important for us as patients to reach out to one another and offer a receptive ear and heart. Additionally, it is important healthcare professionals also have emotional intelligence and empathy (2). And if you are a family member or friend of someone who has issues you should not only listen but arm yourselves with as much knowledge as possible.
Too often people with misunderstood conditions not only get denying or gaslighting from self-proclaimed “experts”, they are given poor advice that is oversimplified. Some insinuate that these complex areas (mental illness and medically uncertain symptoms) are due to moral failings rather than keeping a neutral and open position (as they should if they are an ethical skeptic). Platitudes regarding “be positive” and “live with it” or “get over it” are not only wrong, but unhelpful and potentially traumatic for people who are struggling to get by day to day with their troubling symptoms. I have outlined problems with a diagnosis in conventional medicine known as functional neurological disorder here. I outline reasoning, case studies, fallacies, and the ways of ethical skepticism as it is vital if we are to help our fellow person who is facing adversity. What is helpful next to a good support system is championing causes like funding of research for more rare or understudied conditions. While a positive mindset is important for one’s survival through hard times, psychology babble is not the top of the line solution. Don’t be a part of the problem.
For example, with chronic fatigue syndrome, you can find various articles and comments from patients who have felt less than understood and even mocked by the healthcare professionals they were putting their trust in. This is unacceptable. There is good news recently though regarding harmful exercise guidelines no longer being recommended in the UK and Scotland. Jennifer Brea, someone I admire who suffers from craniocervical instability has been an amazing patient advocate for this patient population that has faced suicide and mass denial from healthcare professionals who are poorly versed in ethical skepticism and the scientific method. Her online activism and intelligence has been a great resource for many.
Now, onto the subject of mental-illness. Some of the misconceptions that have existed throughout the ages regarding mental illness are things such as this:
Many studies have found that the public views people with mental illness as responsible for their disorders: because of poor character or lack of moral backbone, people with disorders like schizophrenia and major depres- sion choose to have their mental illness and are to blame for the symptoms and the disabilities that result (Weiner et al. 1988; Corrigan et al. 1999, 2003; Watson et al., sub- mitted).https://academic.oup.com/schizophreniabulletin/article-pdf/30/3/477/5446428/30-3-477.pdf
These types of views are absolutely absurd and ignorant but they are still persistent. It is why I, as a layperson and sponsor in the scientific method make observations along with reading as much material I can get my hands on so that I can further my understanding of the types of discussions and studies going on in those research fields. I also do the same regarding rare conditions. I have had discussions with both patients and some experts in the field and one thing I’ve learned is patient observation and research should NOT be discounted based on credentialism. Credentialism – an implication or overemphasis on academic or educational qualifications (e.g., certificates, degrees & diplomas), awards or publications as the basis of an individual’s expertise or credibility.
Be familiar with these definitions in case you encounter clear examples of it:
Demoveogenic Shift – a condition wherein amateurs of a science are proactive, well versed and investigate more depth/critical path, while in contrast the academic fellows of the discipline are habitually feckless, cocooned and privileged.
ad verecundiam – accepting as evidence for a proposition the pronouncement of someone who is taken to be an authority but is not really an authority. This can happen when non-experts parade as experts in fields in which they have no special competence.
Correlation Dismissal Error – when employing the ‘correlation does not prove causality’ quip to terminally dismiss an observed correlation, when the observation is being used to underpin a construct or argument possessing consilience, is seeking plurality, constitutes direct fingerprint evidence and/or is not being touted as final conclusive proof in and of itself.
Credulity Accusing – accusing a person of practicing pseudoscience and credulity simply because they are regarding an outlier idea. A credulist may be wrong, but as long as they are not pretending to represent Science or claim to be using the Scientific Method, they are not practicing pseudoscience; rather, are merely guilty of being receptive to an untested conclusion.
Critical Blindness – the conflation of a position of authority or influence with one’s presumed possession of a higher level of personal competence. The mental obstacle created in a person granted entitled authority before they are emotionally ready, wherein they lose their ability to create, to gracefully understand or value the dynamics of human nature, motivation and leadership; descending further into shallow and habitual negative or doubtful critical assessments of those ‘under’ or different from them, coupled with an ever growing hunger for absolute control.
Curse of Knowledge Effect – when better-informed people find it extremely difficult to think about problems from the perspective of lesser-informed people; or perceive that their burden of knowledge cannot be fathomed by lesser-capable people, rendering them unable to practice critical or evidence based thinking.
Delusions of Superiority Error – when one believes that they have special traits or talents not shared by other people. Usually these are confined to a narrow range of human abilities, and tend to center around issues of intelligence or education.
Empathy Gap – the tendency to underestimate the influence or strength of feelings, in either oneself and over-estimate it in others.
In closing, I want people who are suffering to know that there are people out there rooting for you. There is an online community who will listen and have their arms open for you. There are also researchers, even if a small group, who are rooting for you and for funding in the name of forwarding research so that we can come up with practical solutions that will actually improve your quality of life. The fact you are not an “expert” in the sense of the amount of degrees you have or being a doctor does not mean your observations, desperation, and pain have no merit, because it does. The Ethical Skeptic is someone who outlined exactly why in his scientific sponsorship post. It is a tool of the social skeptic to deny this critical pathway of the knowledge development process. Your experience as someone who actually lives with your body and brain is something no one can take from you no matter what. Furthermore, I also wanted to add in this cool piece of information regarding empathy and mirror neurons. It is thought that these neurons play a role in our ability to have empathy for other people. This ability is different between people with high levels of psychopathy and high levels of empathy. An interesting example of how skin plays a role in mirror neurons and phantom limb is when a person with phantom limb visually encounters someone else having a painful physical stimulus on their limbs the person with phantom limb can also feel it. So, what is separating us in regards to that type of pain is actually our skin and brain’s perception. I try to think that people who have clear empathy deficits simply have it due to their own bias and neurological capability (or lack thereof) . We all have different levels of emotional intelligence/empathy and our brains have been shaped by the experiences we encounter that involve ourselves and other people. But we, as a sufferer, hold a type of knowledge no person can have simply by reading schoolbooks and working in a lab. So, always remember: you are valid.
Resources for patient outreach: https://howtogeton.wordpress.com/how-to-make-friends-in-the-online-chronic-illness-community/ https://participatorymedicine.org/2016/rare-disease-resources-for-patients-caregivers-medical-professionals/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4182653/ https://www.meaction.net/ https://www.nimh.nih.gov/outreach/index.shtml https://www.nasmhpd.org/content/outreach-awareness
I’m sure you know the feeling.