Thank you for your honesty, transparency, and desire to reach out and share.
In January of 2015 I was referred by my Primary Care Physician for physical therapy and a sleep study after noticing an increase in fatigue and just not feeling so well.
The physical therapist noticed C1 vertebra was out of place, attempted to push it back in and I nearly fainted. I’d already had one such spell but although I’d had this since at least 2nd grade I usually didn’t have it more than once a year once I reached adulthood, but 2015 was different though I had no idea why. Soon after beginning physical therapy I saw a pulmonologist who was also in Sleep Medicine He ordered the sleep study and thinking it would come back negative I was surprised when out of the blue
I received a call asking me to schedule a CPAP titration. I went in, had it and not only did it not help, but made my respiratory symptoms worse, so much so that it had to be ended early. (After I went home I was in respiratory crisis for several weeks). During the office visit the pulmonologist gravely told me “This is not the kind of sleep study we like to see.”
He explained that I had a breathing pattern known as Biot’s Respiration (similar to Cheynes-Stokes), that it was relatively rare, and that it involved periods of Central Sleep Apnea with hypoxia, and periods of shallow under-breathing. He kept saying “This isn’t good, this isn’t good.” At the time I thought “How bad could it be?” still thinking there would be a simple fix. He explained that this usually indicated some problem in the brain stem; the Pons and/or Medulla.
He said that he looked through the literature and couldn’t find another case like mine since the early 1900s; a man with Syphilis of the brain, and so he’d given some sort of a presentation on me to other doctors. I also had Myoclonus that became so severe that it eventually was preventing me from falling asleep until 7 in the morning. He ordered a brain scan and when it didn’t reveal anything he dismissed his first hypothesis, but as time went on more symptoms developed.
By around June I began falling a number of times for no apparent reason and started noticing fasciculations in the bottom of my left foot, followed by stiffness in the left leg and when I next went to see him he pressed down on my left knee and asked me to press it upward and my leg started jerking uncontrollably, so much so it nearly got injured! That day I could barely walk to the lobby on the main entrance by the time I left his office because my leg had stiffened up so much and it was unbearably fatigued. Not long after I was having the same problems in my right leg as well. It seemed at that time that neither he nor my GP knew what to do or where to refer me.
I made an appointment to see a neurologist and when I saw her a few months later she noted some findings on her Neuro exam that indicated an upper motor neuron lesion, did a few tests but since she was narrowly focused on patients with Idiopathic Hypersomnia told me it would be best to have another neurologist follow me to continue the work-up.
Things seemed from that point on to be moving at a snails pace although my neuromuscular symptoms continued to go downhill and so did the near syncope. Oddly it still seemed that my doctors were slow on the uptake, but I was by that time needing to use a power wheelchair as it was my stiffness made walking agonizing. I was prescribed Tizanidine by my GP who posited that this might be an exacerbation of my Sarcoidosis or it could be something like ALS.
I woke up early one morning feeling intensely faint, nauseated, and as though I had to poop. As nobody there seemed to have hospital privileges I was finally advised to go to the ER. I was admitted by a female neurologist who noticed that all my reflexes were very extreme. They started me on IV Saline and got me processed. For the first 3-4 days I was nearly stuporous and over an 11 day period my blood pressure spiked high, then really low and everywhere in-between and I had urinary retention. They were more concerned at the time about my neuromuscular symptoms but after a few days on Saline the BP, extreme thirst, salty taste, and near syncope started subsiding. I didn’t know it at the time but the Saline was helping stabilize my autonomic nervous system. I was taken off it for about 24 hours at which time a doctor came in one morning and explained that he’d done this to see what would happen and that the Dysautonomic symptoms got worse when he’d taken me off of it, so he recommended putting me back on it continuously. I agreed. My symptoms subsided again after about 3 or 4 more days. When I was discharged an order was supposed to be written so home healthcare could continue it but wasn’t, and when I went home 4 days later I was in bad shape, waking up again early in the morning feeling exactly as I had before being admitted to *****.
Home Healthcare was short-handed that day and couldn’t get a nurse out. My regular coordinator was out that day and a replacement was covering for her. This woman insisted I go to the ER although I really didn’t want to. The main reason I didn’t want to was because I felt so bad I really didn’t want to get out of bed and all the waiting just seemed like more of a hassle than anything else that I didn’t need, but unbeknownst to me that was going to be the least of my worries.
When I arrived I was met by a female ER doctor to whom I explained that I had by this time become severely disabled, so much I could no longer reliably bathe and was pretty much bed bound. I told her that I really needed to get to the bottom of this since I was limited as to how long I could qualify for clinical trials and if I became too far gone then my chances of getting good care went down significantly. She apologized for the slowness in **** routing of me, told me that ***** was going to make this right and if there was anything I needed, food, water, medication to just ask and they’d do it. I told her that I was feeling so bad I felt like crying but that my eyes were dry and I was unable. Then after taking down some information she left and I quickly found that none of what she’d offered was happening. I had to buzz the buzzer for a long time just to get a slightly bigger than dixie cup of water, and the hours ticked by with no food offered. Asking for more water or food didn’t produce any, and finally I couldn’t keep asking. They left me there for hours groaning in agony with lower GI spasticity that just wouldn’t let up.
All the nurse would give me was Valium for my lower GI spasticity and she copped an attitude, hands on her hips waggling her head when I asked for the Tizanidine I was being prescribed on a maintenance basis, as Valium was a poor substitute for a true antispasmodic. I was told that Tizanidine was a “neurological medication” and that I had yet to be diagnosed. I knew this was silly but didn’t know what to do.
A mid-level hospitalist and a female resident came in and first she, then he did a neuro exam on me one right after the other but their demeanor seemed odd as though they were messing with me and I didn’t feel I was being treated respectfully. The male seemed to be minimizing my condition and the female seemed somewhat condescending/amused and kind of creepy, to be honest.
After asking for the social worker several times and finding that though she agreed I wasn’t being treated with respect she felt powerless to do anything about it, I just shut down, hoping that the ER doctor would eventually come back to help me. to ask if one had been in I said no she hadn’t. Several more hours passed and the ER doctor returned to say that a female neurologist would be coming to see me, that I was going to be admitted at least overnight, and then left the room. None came and when the ER doctor returned she informed me there’d been a change of plans; that a male neurologist was going to be coming in instead. She described him as “an old traditionalist”. I knew that wasn’t good seeing as I had something unusual and the neurologist at ******* had recommended I go to a more advanced center like Mayo Clinic to see a Movement Disorder Specialist.
I asked her if he had a problem with a strong woman because having no family to help out at home I had to advocate for myself because there was nobody to look out for me. She replied that she was a strong woman and that she didn’t think he had a problem with it.
Once I was taken upstairs I finally had my laptop back where I could reach it and set about trying to connect to the hospital’s network to notify some people in the chronic illness community as to what was happening. I was unable to get it to work and just then in walked the female resident I’d seen earlier in the day and a strange man wearing a surgical mask. He was clenching his jaw and seemed on edge and right away I felt uneasy about him.
I asked if either of them knew how to connect to the network. He did not answer and came towards me barely introducing himself before asking me to close my laptop. He didn’t wait for me to do so and reached over me invading my personal space and closed it himself, then turned out the light looked in my eyes with his pen light and went on to start testing my strength and reflexes. He was asking me all sorts of pointed questions about my hospitalization at *******, what my understanding was of why I was at ****** ER, and then when he asked my symptoms and I answered with their proper names he said “You know a lot of neurological terms, don’t you.”
I told him that I figured that if I could use one word rather than 5 and he knew and I knew what it meant that’s what was important, that I grew up with a father who was a scientist and that there is a whole new generation of educated patient out there today. That seemed to infuriate him. Right away the minute he touched me I could tell he was being too rough but I wanted to make absolutely sure I was reading that correctly so I watched and waited to see what he was going to do.
He seemed to get rougher as he went along and when he got around to the reflexes in my left arm he raised the triangular rubber hammer above his head. It was at that moment I knew that this was more than just unintentional roughness; that it was out-and-out abuse! He hit me several times as hard as he could very quickly while trying to pretend he was just doing his job.
At that point there was no mistake about what his intentions were and when I cringed and moved quickly to my right in the bed and cried out in pain and fear he did not apologize. That made it even more clear that this was a sadistic and malicious act. I looked straight at the ER doctor who was to the right of my bed. Her eyes were wide but she made no move to say anything or physically intervene.
Neither did the female resident. I was very exhausted and was somewhat in shock as to what had just happened so I was processing slowly and kind of dazed.
I had Babinski reflex in both feet both lying on my back and with feet hanging over the bed. Then he asked me to walk a few steps. I held onto both him and the female resident who was standing on the left side of my bed. When I pulled myself up to a standing position putting pressure on both my hands I had one of my abnormal back arching jerking movements. I was a bit wobbly on my feet as well.
Then he said with the same interrogative tone “You had a psych consult at *******, didn’t you.” I told him that I’d asked to talk to someone about grief about how quickly I’d become severely disabled and that it was an adjustment. “ What did she say to you?” he pressed.
I related to him that she’d told me that she didn’t feel anything was psychiatrically wrong, that she felt what I was going through was understandable and completely situational but that she just needed to do an assessment, that it was basically a formality. (She had to put something down officially so she would get paid. They can’t bill insurance for grief. That hadn’t really occurred to me at the time when I’d asked to talk to somebody).
This sadistic male neurologist proceeded to tell me in a very aggressive manner that he read all my records from ********, that every test in the book was done and that “they ruled out everything”, so therefore there must me nothing neurologically wrong and it must be “psychiatric. I think you have Hysterical Conversion Disorder” he continued. At the time I had not read the records yet but in any case I knew my body and that that was not true.
I told him not to jump to conclusions and explained to him that this was just the first round of “gross” tests for things like brain tumors and acute infections but that the admitting neurologist wanted me to have a more involved evaluation at one of these top level specialty clinics. (I didn’t know at that time that the EMG was not in fact completely clean; that he’d lied to me about that. When I read a copy of the record two days later I found out there was slowing found in 2 or 3 muscles of my left leg and that was even on a very minimal one that just did a few muscles of the left arm and left leg).
“I have nothing to gain” I said to him. “Every bit of this process has been horrible, besides my physical strength is the feature in myself I value most so why on earth would I give that up voluntarily? It doesn’t make logical sense.”
“It can be unconscious.”
“Besides I have things already documented that are of Central origin, for example Biot’s Breathing.”
He seemed stumped at that point. I could tell he was not familiar with the condition not its etiology.
I went on to say that I did not want any of what he was suggesting to show up in my records because I did not want it to poison the well, as I was still going to need to see the specialist(s). I told him that I see all my doctors at **** and that I have good doctor patient/relationships that I’m sure he realized could be affected by such stigmatizing conjecture.
“They called me in to give my opinion and I have to give it” he said arrogantly.
I reiterated again that I did not want any such thing written, as it really could prevent me from getting the real treatment that would help my real neurological condition.
At that point he got very huffy and said, “Ms. Carlington, Ms. Carlington, if you aren’t willing to discuss this then there’s no use in continuing this conversation”. He turned to face the door as if to walk out and I reached over and shook his hand, the feeling of which was absolutely repulsive both physically and spiritually; limp, cold, and completely devoid of empathy.
“I don’t mean to offend you but you’re wrong” I said trying my best to be as non-threatening as possible, as I could sense a sociopath when I met one.
For a moment he seemed a little less cocky. “I don’t know what I will write”, he said as he exited along with the two females. I hoped that maybe I’d defused the situation.
Just a few minutes later the female resident came back into my room alone. I was lying on my back with my toes sticking up under the blanket. She came over to the end of my bed and plopped her butt down hard on my left foot. It was not just sitting; she hopped on it the way a child bounces with a bit of a catapult after leaving the floor. I yelled out “Ouch! loudly and realizing that she’d done this intentionally I glared at her. She pretended to be sorry, apologizing, then went to sit in the chair on the other side of the bed. I wanted her out of my room so I told her to get the ER doctor. At this point I really didn’t know who to trust as this was getting so strange.
When the ER doctor came back in and sat in the chair I looked at her and told her that this made me really sad, that ***** had broken my trust, that I could never see doctors the same way again, especially neurologists. “You told me you were going to make it right, not make it worse” I said with tears in my eyes. “You heard what he said”.
“Yes, I was in here.”
“And you saw what he did.”
She told me she was sorry, that she felt I was a good person, that she believed me that I really was ill and that I should pursue this further but that she wasn’t a neurologist. That was a real cop-out. (I learned later in the internal investigation that she had been the one who called this guy in; at least that was what she told the woman from Patient Relations).
Much to my horror when I received a copy of the ER record the following week what I read made me sick to my stomach. The evil on-call Neurologist had written much worse than what he’d said to my face. He wrote that “she threw herself backward in dramatic fashion”, “It is clearly functional”, and went onto say “It even occurred to me that she might have been feigning.” He made excuses to try to discredit why I had Babinski in both feet (saying I “must not have been relaxed”) and then lied to say that my toes pointed downward upon sitting on the edge of the bed. One of my neurological problems I was born with is I am not able to voluntarily point my toes!
The med-level hospitalist had also written highly stigmatizing statements and his whole tone came across as though he despised me and didn’t think I deserved any sort of compassion.
Over the next 7 months that followed, just as I’d feared I lost first my GP of 13 years. Then the libelous material influenced a new female Neurologist in ***** General Neurology department and her Nurse practitioner. After I’d seen the Neurologist for the first time then my pulmonologist started openly telling me I should see a psychiatrist because of what she’d written. I didn’t know the half of it until I got a copy of the doctor’s notes. Suddenly people weren’t returning my calls, and doctors weren’t writing orders, nor giving any referrals. I couldn’t get anyone to truly do a fair investigation and I found their grievance system completely circuitous, leading back to the beginning with never and concessions nor resolutions offered.
My request for the records to be amended was refused and they would not remove any of the defamatory material. The hospital would not restrict the offending doctors from access to my electronic record.
Then the letters started coming from Administration one by one, veiled threats, non-apologies, lack of accountability at every stage, and finally a letter from the Chief Medical Officer officially kicking me out “because” as she put it “we are unable to meet your expectations.” This woman was a coward. She didn’t even have the guts to put her phone number or contact information in her letter. This from a corporation that spends millions, probably billions of dollars on patient satisfaction surveys (but even the nurses readily admit that they’re just for show; that they never take patients’ nor staff’s suggestions.
Then an electronic block was placed on my ability to schedule any follow-up appointments with my remaining doctors, mainly the two neurologists; in General Neurology and Sleep Medicine. Because of the block I was also refused an appointment with ****** Gynecology when I had a severe urinary tract infection. I have chronic E-coli infections and they progress very quickly, as I’m immune compromised. It was already affecting me systemically and if I had not been able to get a mobile Primary Care service to call in a prescription for antibiotics I would have probably ended up back in the ER. I’ve been to the ER 3 times in 7 months for the near syncope, the last being just about 2 months ago.
By this time the Neurologist in General Neurology who’d come back from 3 months maternity leave had had a change of heart after seeing my blood pressure stats and learning more about me and was now being supportive. She and one of her nurses were working filling out an application so a non-profit organization could cover the travel-related expenses for two trips; one to Cleveland Clinic for my Dysautonomia, and one to the University of Florida Movement Disorder clinic.
I still had one last appointment with the Neurologist in Sleep Medicine who treated my Myoclonus and was supposed to fill out my forms so I could take my oxygen concentrator on the plane. I never made it because me and my personal assistant were turned away from the clinic by the office manager who took me aside and told me that “Patient Relations has been calling here all morning saying you’ve been terminated and that we’re not allowed to see you.” The night before I had sent her (the Neurologist in Sleep Medicine) my itinerary. I know now that Administration had put Patient Relations up to Sabotaging both trips.
I’ve lost about half my hair volume. It comes out in my hand, in my brush, on my bed sheets, in the tub, and I lost 30 Lbs in just one month. Sometimes I run a low grade fever, and I get hot and then cold alternately almost every day and night.
My attempt to find new doctors is fraught with delay after delay. I honestly don’t know if or when I will get the necessary out-of-town referrals.
The Office of Civil Rights has taken this on the basis of discrimination based on both gender and disability, but I will most likely need a private attorney to obtain a court order to have the libel removed from my medical record so that I have a fair opportunity for the care that I need.
Right now I’m running into one barrier after another, as I don’t think this type of thing has been challenged legally just yet. I would probably be the first to set a precedent and I feel a strong mission to do that so that other patients who are similarly bullied will have an easier time obtaining justice.
I am navigating uncharted territory and although it is officially no longer PC to bully people nowadays I’m finding out that in much the same way women who are raped feel raped again when they go to the police and are condescended to and treated as though they’ve done something wrong, I am encountering the same biases when talking to attorneys and mainstream news media.
They just don’t get what the big deal is because I didn’t have a serious physical injury from the beating that was forced on me in the ER. That seems to be the blind spot people get stuck on. They think “no harm no foul”, but there was/is in fact harm, irreparable harm not only from the incident of physical abuse but because the entire system violated my most basic trust in the very people who I had to depend on to help me to save my very life!
We often don’t see these incidents come to light in the mainstream media until people commit suicide because they can’t carry the burden alone any longer and I think that’s a real failing on the part of news media. I was actually told by a screener of one of the local TV news stations “That’s a personal issue, not a media issue”, and she said I needed an attorney to find out why the hospital was doing this (thinking it could be worked out as though she assumed they were reasonable) implication being that I shouldn’t be making this public and that I had something to be ashamed of.
That right there is a big part of why it continues to happen; that very attitude within the general public. Why the hell is it incumbent upon survivors to feel responsible for the abuse that was done to them? Why are we expected to hide in the shadows? We have done nothing wrong!
There seems to be more societally imposed shame around the act of telling than there is about the act of abuse, and quite frankly that’s fucked up! I want to defy that societal taboo with every fiber of my being because no activist in history got anywhere by staying silent just to make others less uncomfortable. Bullying, especially when it’s done by a whole system leaves people alone and isolated from support because for the most part everyone with real power to change things just gets embarrassed to be hearing about it and refuses to get involved. If I had a dollar for each person who’s path I’ve crossed who wished me “good luck” and went on their merry way with head up ass I’d be a wealthy woman right now!
There seems to be a consensus and collusion of silence when it comes to holding doctors and medical professionals accountable for their actions and that needs to change. I literally had to push the issue even to get a police report made of the physical abuse incident, and then I could not get a warrant for the man’s arrest because as the investigator said “No judge would issue a warrant because it’s your word against his, and he’s a doctor”. Had he been doing the same thing on the street and had he been anyone other than a doctor he’d have been taken into police custody. This is a double standard and opens the door to all kinds of abuse by impaired professionals. As long as this sort of thing goes unchecked patients are in danger.
State regulators also dismissed my grievance of that beating and all the other parts of the bullying because of the assumed credibility afforded these medical people who wrote in my chart. I was floored to find out that on the state regulatory level that everything’s investigated by using the word of the perpetrators, writing it up, and then providing it to the patient as though it didn’t happen or patients are told it was within “acceptable practice” just because it is assumed they must know what they’re doing! That in and of itself poses a giant conflict-of-interest and I don’t know why people who work in these regulatory agencies don’t see something wrong with this picture! I wonder why it is that they already have a leg up on us patients and there isn’t a level playing field and people so easily accept that as OK? They seem to place it in the same category as mere rudeness but it’s so much worse than that. If anything a doctor or nurse or hospital administrator should be held to a higher standard than the rest of the population; not a lower standard for the very reason that there is a distinct power differential and the patient is in a compromising position.
I also encountered this sort of collusion within the ****** system after the edict had been given for me to be kicked out. It occurred to me that any staff person in any of the clinics where I was being seen could have (and would have been well within their legal rights to) refuse to participate in their employer’s corrupt agenda on the grounds that their employer was commanding them to violate their ethical principles as healthcare professionals, and if they were fired for such refusal they’d have grounds for a wrongful termination suit! I told several nurses to go to their Union rep and as far as I’m aware they did not attempt to do so.
The simple truth is this; The “Chief” at *****would not be able to carry this out without the help of “the Indians”; those on the front lines of patient care delivery. Although this analogy may seem extreme when you really think about it there is an unavoidable parallel with what happened in Nazi Germany during the Third Reich. Hitler would not have been able to assassinate 6 million Jewish people without the help of thousands of worker bees so to speak. I made the comment to several people at ***** that no job is worth violating medical ethics against a patient. One can always find another job, but at the end of the day one has to live with their participation in a corrupt system for the rest of their lives.
As a healthcare professional one really has to decide whether they’re in the field for the right reason; to help people, because if that is not their fist priority then they are hurting, not helping patients and getting rid of the patient does not absolve one of that primary responsibility. The question then becomes what happens the next time they encounter that ethical dilemma, and the next, and the next? They might get rid of me but the problem still remains. How many times are they going to brush it under the rug before they get real and address the fact that the problem lies in the practices of their corporation; not in the patient?
The “team approach” became a “gang approach” and each person on every level; Clinical, Administrative, and Supervisory, played their part in the carrying out of discriminatory, negligent, abusive, in some instances outright malicious acts against me which culminated in the sabotage of my care and lack of access to it, placing my health and my life in jeopardy. The electronic record, phone messaging system, Patient Portal, the clinics, the ER, and internal grievance procedures were all abused by various employees of the corporation in a unified effort to work directly against me.
To those who have never experienced this those words may sound paranoid, but I really was none the wiser that much of this was going on for the better part of a year, so my pulmonologist’s comments in my chart stating I was “suspicious” and defensive at having my ideas challenged (implying it was without basis) simply don’t hold water, as in actuality I wasn’t near suspicious enough! In that last appointment with him I remember his saying to me “You’re smiling! You’re smiling!” with an almost eerie alarm, as if to imply I was really being bizarre. Somehow that simple act of affection was twisted into something diabolical about my character. The reason I was smiling is because I still felt that he was on my side and I was happy to see him. I did not yet know he was secretly stabbing me in the back. I trusted these people even as they charted extremely judgmental and accusatory hypotheses and misconstrued and spun what were minor quirks blowing them way out of proportion (without my knowledge). It really wasn’t until several doctors began openly treating me as not credible, refusing to partner with me in my care, refusing to do their jobs, and treating me with direct disrespect that I became at all suspicious that anything subversive was going on behind the scenes.
This was my support system and I had to watch helplessly as it was destroyed one brick at a time. Finding out that these relationships were for all practical purposes not supportive but instead predatory was a big blow and it shook my confidence to its very core (not only in doctors and mankind as a whole, but even in my own ability to choose healthy relationships).
One day I want to confront all my abusers from this God Forsaken place but I may have to save that for court, and meanwhile I’m trying my best to pick up the pieces of my broken life and attend to my health but that’s not easy to do when there’s really nobody there. It’s tantamount to having a car stalled in the middle of the expressway and you know that it will take the strength of 3 more people to push it to the side of the road but there’s nobody you can call to come and help. At that point in time you know that it doesn’t matter how intelligent, strong, or skilled you are; The capacity is not in the body that you own to get the whole task completed and no amount of wishing, willpower, nor positive thinking will change that.
There’s this misconception (even within the chronic illness community to some extent) that one can just simply “go to another doctor” and leave all that behind but those who believe that are very naïve, failing to see the bigger picture and don’t understand the mechanics of character assassination and what a powerful weapon that can be when the person wielding that knife is a doctor who is assumed by most of society unimpeachable.
Although I keep trying to rise above, keep putting one foot in front of the other I cry every day at some time or another. It just hits me all of a sudden even in the middle of happy, enjoyable activities, and being left to suffer with a health condition untreated makes an already emotionally charged situation even more intolerable. Abuse is hard enough when it’s coming from one or two people, but when one is attacked by a major corporation and you have to try to discern who all is involved to identify your attacker, whom in this industry often hides behind a mask of false benevolence that brings the meaning of abuse to a whole other level. There’s this sense of spookiness; that your perpetrator is everywhere at once, omniscient and omnipotent like “big brother”. It’s like being blindfolded with earplugs, given a pocket knife and then without any proprioception expected to fight multiple attackers with machetes.
To anyone who doubts or minimizes the resulting damage that results from such an encounter I can say from experience that I have suffered other types of severe abuse over the span of my lifetime and this is worse for several reasons;
1) Because big corporations are wealthy and can afford a whole team of lawyers on retainer to cover their ass and they can utilize many more throughout the community;
some seen and some unseen. There are private attorneys in the community who may be working on a contract basis for the corporation and therefore it would be a conflict-of-interest for them to represent anyone who might be suing them. This might even be for something unrelated to the abuse (for instance, I ran into an attorney whose colleague in the same firm was currently representing ***** on a patent issue. Luckily she disclosed this to me honestly, but not all of them will). This narrows the options for representation of the victim.
2) Multi-million/billion dollar corporations often have other connections in the community not readily disclosed such as with other medical practices., i.e. silent partnerships, mergers, they may serve on the board of directors of other medical facilities, non-profit organizations, top brass rub elbows with various government officials and in some instances even the agencies that are supposed to be regulating them. Both “hard” and “soft money” donated to political campaigns can be problematic, can and does create alliances and biased loyalties, sometimes “unholy”, thus issues which should be pursued on the patient’s behalf may not be with a few simple phone calls.
3) Even the suggestion of their power can have the chilling effect of creating an unspoken “hands-off” policy understood by many in the community complete with the implied message (and implied threat) that they’re above the law. I have been told by several attorneys already that they are too small to take on such a big corporation.
4) There are doctors affiliated with both the corporation and its competitors. This raises questions about access to records and privacy for the patient and in such cases in which records contain defamatory statements about a patient the pattern of defamation in medical records could continue into the next doctor/patient relationship.
5) Even in instances in which a new doctor is completely independent doctors tend to identify with each other before they’d identify with a patient, so whether or not they read the offending material this places the patient in a double-bind. If they give the new doctor a blanket release of information it’s very likely that the libel will influence them to make negative assumptions about the patient whether consciously or unconsciously. If they refuse flatly or are evasive, and even if they tell the new doctor that things were handled badly and that therefore they don’t want to release the records to them it makes it appear as though the patient has something to hide even when the statements therein are untrue.
6) The programmed mistrust that results from being abused by multiple medical professionals on this level can and does make it difficult for patients to feel comfortable in disclosing information that might actually help in diagnosing disease and they may be hesitant to go to the doctor and/or hospital even when it’s a matter of life or death. Patients might even discontinue any treatment that is associated with those doctors who have betrayed them because either they feel that if they can’t trust that doctor they can’t trust their treatment advice, and/or if the doctor has questioned the validity of their condition it can (even if unconsciously) cause the patient to doubt themselves. This is potentially dangerous to the patient’s health and in some cases their life.
7) The all-encompassing nature of institutional bullying in a healthcare setting can and does inhibit the forming of all new relationships. I’m finding that after this experience I don’t want to get too attached to people I meet in-person because I fear that this might be used to hurt me if they should at some point turn on me or that I can’t trust that the messages they’re giving me from the very beginning that they like me are genuine. This is an issue I never had before and I’m finding it’s not something I can just talk myself out of.
8) People can and do commit suicide as a result of bullying of any type, especially when it’s sustained over a period of months or years. A big part of this I believe stems from the difficulty victims have in obtaining justice. Without resolution and accountability, placing the blame where it belongs and removing it from the victim, people who have been bullied find it difficult to obtain closure, a necessary part of the healing process. The more power and influence the perpetrator has the more difficulty the victim has in putting the necessary supports in place because of the intimidation factor. When bullying involves defamation of a nature that influences individuals (such as doctors) whom to a great extent affect the outcome of a person’s life and/or quality of life the damage, both physical and emotional, can become insurmountable. Lack of access to or access to medical care too little too late can not only directly shorten one’s life-expectancy, but when faced with the very real possibility that their medical condition will not be treated any time soon, and possibly never, the individual may decide to end his or her suffering the only way they can. Hope is an important mainstay of coping effectively with chronic illness as well as for the survivor of institutional bullying. When all options are closed and life becomes too much of a struggle just to get one’s medical needs met the thought of ending it all can become a very real option. I believe in euthanasia, but it’s a damn shame when if not for the malicious actions of saboteurs it would have been unnecessary in so many cases. Too many people end up a statistic.
Things you can do if you find yourself in an institutional bullying situation;
1) Do whatever you need to do to get away and to safety as soon as you can.
2) Note names, dates, times, and any other pertinent details and be sure to document them.
3) Try to identify like-minded people who can help whether that means emotional support, legal assistance, independent medical opinions, etc.
4) TELL, TELL, TELL! Make it as public as possible! (This one’s really important!) This serves two functions; it acts as a paper trail, and when you refuse to stay silent or keep their secret it takes away some of their power. When you shine a light on what they’re doing it puts the shame back on the perpetrator(s) where it belongs. File grievances, post on social media, blogs, create Youtube videos, even testimony at conferences and before your state legislature will help to eradicate this problem. Organize with others who have had similar experiences, even contact state and federal officials. Secretary of Health and Human Services is a good one to contact if your abuse happened in a healthcare setting. As more patients get active politically and laws are strengthened we will see a reduction in these types of incidents. You may also want to contact the Office of Civil Rights. If some of the grievances fail don’t give up. This too is useful information you can provide to higher levels of government to show which procedures aren’t working, and to provide information to your attorney if you decide to take legal action.
We’re a long way from where we need to be on this issue, but we should accept no less than zero tolerance of this mistreatment of patients and we must hold our legislators on both State a Federal levels accountable and the news media to make these types of medical facilities accountable for their actions.