Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.

He has since died, and I took on the cause of making cancer care more transparent for everybody.

Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."

I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.

I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."

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Monday, January 26, 2009

Abused Patient Syndrome?

There is a phenomenon among abused children diagnosed with “Abused Child Syndrome.” These kids, through out their lives into adulthood, seem to be more acutely aware of others feelings and possible reaction to these feelings through facial reading and body language.
As far as I knew, this response was limited to children who had suffered abuse at a young age, and by necessity were forced to anticipate the feelings of their abusers to remain safe.
However, on the day of my PET scan I was nervous. Often, when I’m nervous, I get jittery and I talk.
Standing in line to register for my PET I began speaking to the woman in front of me. She told me she was there for her “Yearly Scary” or mammogram check-up after breast cancer treatment.
I laughed and told her I’d never heard it referred to as that, but I was there for a PET scan, my diagnostic test to see if my transplant had been successful.
We both admitted we were nervous and that we turn into neurotic, crazed individuals around the time that our tests come up.
Then she admitted to me that after her test, in the doctor’s office, she searches the Doctor’s face, watches his body language, his positioning, and the context of the words he chooses to use to try to anticipate her results.
I thought I was the only one. One test day, I want to know my results. I want to know them immediately. I want transparency between the doctor and I. I understand that the truth may not be stated as clearly as I would like so I search for other indicators.
Psychologically, this makes sense. A person’s brain and perceptions are very susceptible and vulnerable during traumatic periods. Consequently, I don’t believe a patients brain or psyche can differentiate between a doctor that is ordering harmful, painful therapy in search of a cure and a person that is just outright hurting us.
Essentially, the message gets muddled in the mind, the provider becomes the abuser (due to their power to order harsh treatments) and the patient the victim.
The “Fight or Flight” response is very rudimentary. It has been in existence sine the dawn of man. It is not a sophisticated mechanism. However, this is the mechanism often employed in conjunction with fear in the doctor’s office.
The body is conditioning the patient to view the doctor, who has power over their treatment, as a predator or abuser.
Everytime a test comes back positive, it’s like a slap in the face to the patient. Every new chemotherapy is another beating. Every new surgery another stab in the heart most of these are ordered by one guiding person, the doctor in charge.
In the presence of a vulnerable mind, the complex systems that allow people to differentiate between someone who is trying to help by hurting and someone who is just hurting is indistinguishable. Thereby a rudimentary, autopilot safety response turns on, and the patient begins to exhibit signs much like “abused child syndrome.”
I think this is a really really cool psychological theory speaking as a provider. As a patient that experiences this, it’s not so cool.
This pathological psychology further burdens the patient and widens the gap of power between the doctor and the patient. This will seriously inhibit communication as the patient begins to take on the role of the abused, and the provider, unknowingly, continues in their role of abuser.
The stage is set for the patient to feel submissive within the clinic setting. The patient is told where to sit, while the provider maintains a position of power in front of the desk in a chair that is clearly theirs. The patient must accommodate the providers schedule and show up at the time they designate.
If this time is not convenient or something comes up, the patient must wait “patiently” to be seen when the doctor is able.
This sends a clear power statement to the all ready vulnerable ill person who is so desperately seeking stability.
The message often received is the doctor is in control. He/She is in control of the time and place I see them, they are in control of how I feel (by prescribing medications or not), they are essential in control of my life (specifically with specialists who care for people with life threatening diseases).
It should not come as a surprise that in this environment patient compliance is an issue. The dynamics in the doctor-patient relationship are set up to instigate rebellion. When one person has all the power, and the other feels helpless, it is human nature to find a way to retain some control. This is often manifested in self destructive, noncompliant patient behaviors. The patient is not rebelling against themselves and the disease entirely, they are rebelling against an establishment that they feels abuses and objectifies them in many ways.
To resolve this problem the environment and dynamics of the patient-provider relationship must be altered to include the use and empowerment of the patients.
Providers could begin to ask psychosocial questions in addition to the routinely asked physical questions that only serve to objectify a patient and make them feel like a prop, lab rat, or dummy.
Jokes could be allowed to ease tension and be instigated by the provider.
I experience this reaction myself. It makes psychological sense. A person’s brain and perceptions are very susceptible during periods of trauma.
It seems to me that adult cancer patients can get a response very similar to Abused child syndrome which is manifested by our attempt to predict the upcoming news, prognosis, or treatment path prior to any spoken word.
I do this myself in an attempt to anticipate and prepare myself for bad news, just like a child would prepare for a slap or beating.
My senses become more acute. I am hypersensitive, not really emotionally, but to all the sensory messages I am receiving.
I watch the Doctor carefully as he walks in. If it is slowly, with a side glance, formal “Hello,” then straight to his chair. I’m screwed. He has to give me bad news and he’s depressed about it as seen in his slower than normal entrance. His inability to address me face-to-face in a business manner means the same thing. He does not want to look at me, which could possibly make him feel bad for me or attached. There is no room in these moments for cushy feelings. It’s the worst part of the job. Formalities undermine any sense of endearment, the doc is all business.
However, if he has a little hop to his step, if he comes busting into the room like a child who just won a big game, and gives a big jovial hello, life is good for both of us. He’s celebrating inside and trying to hide it, but he knows he’s THE MAN.
Eitherway, I want to know what will happen before they tell me. I want some sense of preparation before I feel the hit to my stomach.
This isn’t just me. I did some informal research, where I always do, in the lobby and waiting in line. Most of us who have undergone serious therapy do this. I’ll tentatively say 65% minimum.
We are traumatized and we, for some unknown psychological reason, are responding to our doctors as our abusers.
It makes sense. You can’t blame your body for abusing you, that would be counterproductive to healing. The only consistent external force seen in our suffering is our doctor.
A doctor “controls” you. They decide your fate such as whether you are okay to resume your normal life or damned to more treatment. Their weapons of torture are treatment: surgeries, chemotherapies, radiation, etc.
No wonder many say doctors have a “God Complex” the psychological structure of treatment, of putting your life in somebody else’s hands, demands the inhuman mentality.
I do think this “Abused patient syndrome” is a very real possibility. After so much torment being ordered by one sole provider through messaging bad news, ordering painful tests, and chemotherapy regimens your psyche begins to respond to that person as a threat, as someone you need to protect yourself against.
Providers have all the potential to harm you in the same manner an abuser would. I’ve often thought of my doctors as a little bit sadistic to withstand viewing suffering so often.
Then again, I’ve also wondered if I’m a little bit of a masochist for taking it over and over again. I do have evidence that I’m a little bit of a masochist and that I enjoy suffering and pain: I’m now a Red Sox fan.
The body, and therefore the psyche, cannot tell the difference between suffering pain for a purpose, such as a cure by the providers, or pain as a result of abuse. It is all the same feeling. It is all the same pain despite the best intentions.
This is experienced by patients who have undergone multiple treatments, and this phenomenon seems to be an invoked response to the pain and pressure of being a seriously ill patient. Unfortunately, this appears to be manifesting as a victim vs. abuser mentality in patients. The ramifications of this mindset could possibly thrawt the healing process. I think it is important for both providers and patients to be aware of the possibility of this reaction and take steps to prevent this dynamic from forming.
FYI- I wrote this prior to receiving my PET scan results. I asked many people waiting in line and in the lobby if they experienced the same feelings and reactions I did when waiting for important test results. Overwhelmingly, the response was “yes.”
Also, my prediction as to how my doctor would behave in the presence of good or bad news was absolutely correct. He did walk slowly, knock softly, had difficulty making eye contact, and introduced himself formally.

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