You don’t have to do things the traditional way. You can create your way of doing things. With TBI, you have to if you want to recover.
We are conditioned to speak and write in a grammatically correct way. It’s supposed to make communication better. However, it restricts communication to anyone who can speak the “King’s language.”
Patients with limited communication skills for a variety of reasons, including medical, are often not heard. Culture, along with illness, affects how a patient communicates. It takes patience to listen to people who are culturally different and ill. Healthcare is designed, so most doctors don’t have the time to listen to patients. In my case, they did not care, and most did not believe me.
I was in that mindset when I started my 30-day writing challenge to write about my experience as a patient in Massachusetts and New Hampshire. By sharing my story about the pervasive way in which healthcare is broken to the point of doing more harm than good in high-risk groups, I hope others will too. Together we can get reparations for damages done and shine a light on a healthcare system that creates health disparities.
Just because a symptom for a particular illness or an adverse reaction is not in the medical books does not negate its existence. For me, medications didn’t work as expected and often were associated with side effects that doctors would dismiss.
I told the sleep specialist, a Massachusetts General Hospital (MGH) physician, I had palpitations on Vyvanse and Provigil, and he did nothing. HE CONTINUED THE MEDICATIONS after I passed out and hit my head, fracturing and dislocating my jaw. Two months later, I had a hypertensive crisis with a stroke– right-sided weakness and aphasia.
The doctors at Southern NH Regional Medical Center, where I went for evaluation, took the precaution of getting a neurology consult. But ordered a psychiatric assessment despite a BP of over 200 /120 on admission because they did not believe me or the physical exam. The psychologist threatened me. I had an undiagnosed concussion and new-onset HTN, and the psychologist wanted to put me in a mental institution for abnormal behavior. Essentially, the internist/hospitalist who admitted me medically cleared me for psyche admission.
During that hospitalization for a stroke, they stripped me of my dignity. I was forced to undress in front of a security guard and an audience as if I was property.
The psychologist or therapist then proceeded to ask inappropriate questions about my personal life. None of his questions assessed my judgment or risk of harm. He wanted to know about me. It was almost like his personal need to know.
I complained to the hospital administrators at Southern NH Medical Center without avail and even sent a letter to the board of medicine in NH regarding the psychologist. They thought it was appropriate for him to threaten me with institutionalization when I just had a stroke. What if they had institutionalized me? My problem was not psychiatric, but they were determined to make it so. If they had succeeded, I would not be alive today.
I am a medical doctor who was dismissed and abused by the medical staff and administrators at Tufts Medical Center and Southern NH Medical Center, where I once worked. If they could boldly not believe me and do harm without care or fear, can you imagine what they do to other patients with no knowledge of medicine?
Me to the “Kings Language” :
Reasonable Accomodation
ADA Coordinator
Illegal
Illegal
Illegal
Actionable Charges
Healthcare Proxy
Medical Board
The Joint Commission
Yes I know this makes no difference. Still.
The problem is what you said : they don’t CARE ….even when, due to fluke circumstances, a patient manages to get around the Does Not Listen barrier and squeak out statements for which they are now responsible to respond to, they don’t look at us as human beings. We are stupid dying waifs, and they simply have no regard for the sanctity of human life, I’m dealing with MGH now.
The larger problem: KICKBACKS. COLLUSION. GOVT CORRUPTION. GREED. FOR-PROFIT MOTIVATIONS. PATIENT PROFILING. TAKING BRIBES. ORGANIZED WHITE COLLAR CRIME. CONFLICTING INTERESTS LIKE SELLING MOBILITY DEVICES OR REPPING DRUG COMPANIES. STALKING AND INVASIONS OF PRIVACY VIA MY MEDICAL RECORDS BY INTENTION MEANS. PERVASIVE AND RELENTLESS PURSUIT OF THE LATTER. CRIMINAL ACTIONS. CLINICAL SETTINGS.
Ever tried to look into how to get a clinician who is hellbent on destroying you to stop character defamation, permanent implications to your record without engagement or your knowledge, who simply won’t stop pursuing your demise? Good luck. I call this unwanted attention : harassment. Try to find a legal process that forces them to stop or even helps you to get safe, here in MA. Tell me when you find it.
HUNTED AT TIMES LIKE PREDATOR AND PREY, LIKE A SEEK AND DESTROY MISSION….and the system is set up that we have to engage or lose other benefits (necessary to our survival) for noncompliance or face involuntary.
I can promise you , I repeat : PROMISE YOU, that if some of the abusers after me don’t stop, that if I am ever unable to escape the thralls of commitment YOU WILL NOT BE READING IT HERE IN MY COMMENTS ….it will make the front page of the Boston Globe instead and on primetime news coverage on the screens of every living room in this country.
Again : where is the media , the mobilization of citizens to put pressure upon it, and the DEMANDS of REPARATIONS for HARM DONE?
I am no longer interested in fielding nice-ities like a game of catch. They know what they are doing, others know how it’s done….because they order the “hits”, if you will.
This is NOT a one-person, one-place operation. It’s systemic and it’s set up in such a way that ot flows through the system like an uninterrupted assembly line in a mass production facility.
The SECRETS need to cease. The collusion? Published.
I don’t have time to sell the public on the scheme or me not being crazy. I’m too busy trying to survive. The patriarchy running this hell better gtfo of my kitchen if they can’t stand the heat….because I won’t be adjusting the temperature for anyone. Period. Those who understand will…and those who don’t, won’t. Simple as that.
Catch me rolling over and playing dead they will not.
That’s as nice as I’m getting.
Hi Deanna,
Thank you!!! I hadn’t thought about reparations for harm done.
Last year, I could barely get my thoughts together, and it was painful to relive the memories. Now I seem to have a purpose, and I am not sure what it is. It will come to me.
It seems you have a purpose too. We agree healthcare is broken primarily because of corruption. It’s a bigger problem than I imagined.
Yeaup. I got placed on a PTSD medicine, typically used for veterans who return from war with nightmarish flashbacks, as a result of working on MCAD rebuttals for months ….when it seemed that process is equally triggering upon an abused individual in re-hashing triggering memories repeatedly in order to type up such documents. Given my impairments, typing documents like that takes me months, if I ever complete them fully. So, I GET it when you talk about the pain of reliving the memories, trust me! Again…the system is full of holes and not even duct tape. Ugh…
What medicine was that?
The psychologist threatened me in an unethical way. No one discussed the consult with me, so he had no reason to handle my chart. I could feel my blood pressure rising, and eventually, I am pretty sure on discharge, they did not recheck my blood pressure.
You were mistreated, malpractice from the doctor who allowed you to continue the medication that led to the hypertensive crisis. Why didn’t you sue? They would have sued you. Is your reaction cultural?
Hi Angela. I tried. I was disturbed by the discriminatory treatment.
None of the lawyers cared or thought it severe enough. One lawyer said what could be done even if they made the diagnosis. Plenty, I now realize. Another said unless I was dead or lost a limb, they could not do contingency. Some flatly refused to take the case. I filed a complaint with MCAD (Massachusetts Commission Against Discrimination) and that was another tale of total corruption. As for the sleep specialist, I didn’t appreciate his role until now. I am putting the pieces together as I write it.