The Biography of a Tired, Sick Woman
From a full-time medical education coordinator to full-time patient, I am now trying to maneuver my way through the world from the other side of the operating table, and it is a completely different ballgame. Gaslighting, patient-blaming and condescension are daily players in this game.
I was deemed “physically disabled” in 2018 through Social Security, but it took 3.5 years in California and I HAD to hire an attorney. Every player in this game gets paid, except the patient. The patients pay … sometimes with their lives.
It was the beginning of 2016 when I realized I was never going to be able to work in my former capacity again. However, even if my body was/is broken, my mind was/is not. I immediately re-enrolled in college. I wanted to keep my mind fresh in between surgeries.
In 2018, I completed my Bachelor’s of Science in Organizational Leadership from AZUSA University (online, from my bed). I then completed my Master’s in Public Health from Los Angeles Pacific University in 2021 (online, from my bed, and after suffering devastating losses from my own public health crises in 2020.)
I will be pursuing a Doctorate in Social Work in the spring of 2023. I hope that my work experiences, life experiences, and my dedication to furthering my education, will allow me to help others, in the same way(s) I have needed, and need, help. I want to help my “people” (those with chronic, debilitating, and/or life-threatening illnesses.)
In the beginning of my illnesses, I did not understand why I could not just let “things” go. As time passed, I realized it was because I was witnessing first- and secondhand doctors and clinicians having no clue what they were doing. (When I say,”doctors or clinicians,” I mean nurses (CNA, LPN, RN, BSN), AND doctors, like your primary care physician (PCP), or your specialists/subspecialists, like a neurologist/movement disorders specialists, etc. (There is a broad spectrum listed under “doctors” and/or “clinician” in this writing.)
Even worse, I was beginning to realize that every doctor I consulted with seemed to count on the fact that I would not, or could not, have any medical knowledge. Therefore, they attempted to simply placate or downplay my concerns and send me on my way.
Initially I thought it was of my own ignorance as a patient, but in appointment after appointment, the truth became blatantly clear. If I had had no educational, personal, and/or professional experiences pertaining to multiple subspecialties in medicine, they could have fooled me (or the rest of the population) in every visit, every time. Fibromyalgia would (still) be the “Gold Standard.”
My goal is to train our doctors and specialists (all clinicians) to be more patient, kind, empathic, and ethical, by teaching PATIENTS how to be investigators of their own health information. They are taught how to hold clinicians, of every kind, accountable. Never check the hospital’s review of the doctor from where they work. The tests are biased.
No one is a better professional in being and knowing you than YOU. By providing community-based patient advocacy and educational programs directly to patients, they can feel in better control of their information. Providing patients with the tools needed to follow an employee’s (doctor’s) chain-of-command can be sought out by patients through public knowledge available to them. It will no longer be a one-way-street.
If patients know the right questions to ask, they will be better informed. Every patient deserves to get the most out of every office visit. How many times does the doctor or clinician have a partner join them in your visits? You should never go alone, if you do not have to. Make a FaceTime call to have a second set of “accountability eyes and ears” on your appointments. The clinicians will document a visit from their professional opinion and input. They bring reinforcements (yet they both still quite often get it wrong.) You need to bring reinforcements, as well, these days. Your input is valuable, and you should be documenting as much (as much, or more, than your doctor/specialist.)
The sad fact is you are worth money in medicine. To a doctor, you are also worth more sick than well. They send you back and forth between their colleagues and specialties. It is time to cancel the “hamster wheel of medicine,” and rebuild the infrastructure of medicine back to decency through transparency and truly informed consent.
A poor clinician should not hold the same position and pay as the bottom-of-the-class clinician. What keeps a clinician honest if they are paid the same despite their outcomes? (“Oh, well, better luck next lifetime!”) Never underestimate the power of HealthGrades.com for reviews. For doctors to perform better, patients must be willing to hold them accountable, (only) when necessary.