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Erasing My ACES

 

 

The new doctor greeted me cheerfully when entering the room, smiled while hearing what brought me in, and efficiently told me she’d have me fixed, back up and running in no time. And then, this appointment changed to reflect many of my recent interactions with healthcare professionals. She opened my medical record, and scanned the contents for any particular warnings and red flags. She paused, noting my ACE score. I watched as her expression darkened, and she seemed to bank all the hope she’d had for me to a reserve for other patients. The mood of the room became somber, with, “I see you have an ACE score,” setting the tone. Setting me up. The quick, assured solutions offered to me just moments before evaporated, leaving a bare recognition that I am a long-suffering human, who is just suffering a little more in a particular area at the moment. No future, only a product of my past. The quick change in direction was brushed aside with a murmur of explanation stating, “You may not respond to therapies as well as other patients.” I was handed a far less expensive, but more difficult to endure treatment, and told that there would be no further ‘care’ offered at this practice if I did not fully comply. My questions about follow-up were ignored. And then, the door closed. Like others had before, after re-traumatizing me through grilling questions about my street drug use, my latest suicide attempts, if I was being honest with a psychiatrist, and whether I had sexual partners outside of my marriage. Nothing in my personal record pointed towards these interrogations, they were a product of my physicians’ bias. Answering in the negative was met with skepticism that meant I wasn’t believed. It was hinted that answering in the positive would only allow the physician to pass more responsibility for my care on to others in my medical team because the lifestyle complexities meant that it was “not their department.” Crestfallen, with no offer of support, I alone was responsible for the coordinating of my care. 

 

I had to wonder, what in the world was an ACE score, and why was it causing this pain? It turns out, that I had been labeled with an Adverse Childhood Experiences Score, a number that helps to explain a person’s risk for later health problems and challenges. Given to me early on, never explained, but recorded, and copied; over and over, office to office, with every transfer of my medical records. In contrast, a medical diagnosis in my records directs a prescriptive means of treatment for the condition it describes. A label simply summarizes, “Here is a victim, likely difficult or impossible to succeed with any treatment.” Assume the worst of her lifestyle and ability to cope, offer the least in treatments- she is likely already overtaxing the system. Keep her from affecting the measurable outcomes of your practice. 

 

I came to the point where I felt that barriers were being thrown in front of me everywhere. I weighed the cost of receiving adequate care against the personal cost of becoming less than myself by hiding my foundations. I did not receive fair treatment until I made my ACE score vanish. I switched insurers, doctors, and pharmacies. I made sure to completely go outside any networks of care I’d been in. It meant waiting a long time to be re-established for access to the treatment that I needed. But, when I saw the smiles that didn’t quickly fade, and hope was offered again; I knew I’d done the right thing. Even if for the wrong reasons. 

 

Years after erasing my ACES, they were gently reintroduced to me during a consultation. Being treated with compassion and given an explanation, I began to understand how the study, and my score, can help me to be more prepared and aware of my personal risks. Honestly, the more I read about it, the more I fell in love with the appropriate use of the ACE study. It served, not only as assessment of my risks, but as a validation of my successes. It was the first real explanation I’d seen for why the living out of my life has taken so much effort. The reason other people have achieved similar goals with seemingly less time and energy is because we did not have the same starting point.

 

The world in which this score brings help and not harm has not arrived yet, at least not for me. I hope that it is still out there, because I long to be fully known and to hide parts of myself no longer. My triumphs need to be held in honor, my ability to survive viewed as an empowerment. My trauma will always be a real and known factor in the way my health and healing progress. However, it is only one factor, not a complete diagnosis rendering me less fit for treatment. I want to receive the help I intuitively know that I need. Really, I just want to be asked what I need. It is this: To have my painful foundations acknowledged, and to have a little, just a very little of the resulting difficulties, shared out with each medical professional on my established team. I am doing my utmost to work consistently towards my own health. I would love to partner with professionals who support me to continue without discrimination and barriers.

 

My ACE score has changed from being a label to being my lighthouse. A guidepoint, especially during tumultuous or dark times, that can warn me of specific dangers so that I may be watchful. Much more than a warning, it has become a beacon of hope, shining light on just how far I have had to come and that my journey is worthy of celebration. Every increased risk I wrestle with, and rise above, spurs me on with a quiet encouragement to keep moving forward, with my ACE score as a personal badge of honor. 

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@Toni vadala posted:

I absolutely LOVED your post!  I just took the ACE assessment again and, unfortunately, my score did NOT in fact get better, lol, it is still a 10; however, my resilience has grown exponentially in the last 10 years and I'm better for it.  I'm currently working on my Masters in Social Work.  I have an internship and a capstone class to complete.  My internship was delayed due to Covid-19, by 6 months, so I added an extra class, easy peasy, but it is giving me something to do other than working from home, which does NOT fill my day up, no matter how hard I try to go slow and make things take longer...I'm just not built for SLOW.  I wanted to reach out to you, to let you know that I hear you and I can feel that you are on your way to a better future.  I believe that you will find your path to resilience, and you will see that your score, of course, does not define you, like those other "professionals" tried to make you believe, but rather, it is a product of what you survived, and now, you can grow from it, and as you have so eloquently written, share your story, and help others.  Thank you so much for sharing!

Toni, I am sorry you have had to overcome so much, and I’m impressed at your commitment to developing resiliency! It sounds like you are near to reaching a huge milestone with your Masters. Congratulations! May we both keep growing in the right direction. 

Dear Toni,
    Thank you for the kind words. I do believe that it is our obligation to try and help Drs and any healthcare professionals to understand what the ACE score is there for. And to let them know why trauma plays such a big part in our health. Even when we are resilient the traumas still effect our decision making, our socializing our everything including our health. I work in an attorneys office and that is a difficult thing for many to understand. When I worked in the Circuit Court Clerks office it was the same thing. I have come to realize that unless they have actually lived through the trauma many can not understand. Not sure why I am different. I know I can not imagine the pain that others go through traumas but I understand what that trauma can do. I do not need to go through it to know it will have an effect. 

    The feeling is if I have gone through this then I need to let others know they are not alone in there battles of trying to find help. With that being said when I make decisions now I have to think of the consequences of others and fully weigh the pros and cons of that situation. Trying to prevent the past from creeping into that decision is not always easy but I strive for that goal. I can say to be honest I do not always succeed but I never stop trying. This is why the push to tell as many people as possible to help those who do not have the strength at this time. If they can find the help they need when they go to the Dr instead of a prescription or ways to help their addiction with understanding then it an accomplishment. So thank you for the encouraging words that help others like ourselves. Stay Strong in the fight!

Sincerely,Treva Massey
On Wednesday, April 22, 2020, 10:27:37 PM CDT, ACEsConnection <communitymanager@acesconnection.com> wrote:

Comment By Toni vadala: Erasing My ACES
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I absolutely LOVED your post!  I just took the ACE assessment again and, unfortunately, my score did NOT in fact get better, lol, it is still a 10; however, my resilience has grown exponentially in the last 10 years and I'm better for it.  I'm currently working on my Masters in Social Work.  I have an internship and a capstone class to complete.  My internship was delayed due to Covid-19, by 6 months, so I added an extra class, easy peasy, but it is giving me something to do other than working from home, which does NOT fill my day up, no matter how hard I try to go slow and make things take longer...I'm just not built for SLOW.  I wanted to reach out to you, to let you know that I hear you and I can feel that you are on your way to a better future.  I believe that you will find your path to resilience, and you will see that your score, of course, does not define you, like those other "professionals" tried to make you believe, but rather, it is a product of what you survived, and now, you can grow from it, and as you have so eloquently written, share your story, and help others.  Thank you so much for sharing!
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I absolutely LOVED your post!  I just took the ACE assessment again and, unfortunately, my score did NOT in fact get better, lol, it is still a 10; however, my resilience has grown exponentially in the last 10 years and I'm better for it.  I'm currently working on my Masters in Social Work.  I have an internship and a capstone class to complete.  My internship was delayed due to Covid-19, by 6 months, so I added an extra class, easy peasy, but it is giving me something to do other than working from home, which does NOT fill my day up, no matter how hard I try to go slow and make things take longer...I'm just not built for SLOW.  I wanted to reach out to you, to let you know that I hear you and I can feel that you are on your way to a better future.  I believe that you will find your path to resilience, and you will see that your score, of course, does not define you, like those other "professionals" tried to make you believe, but rather, it is a product of what you survived, and now, you can grow from it, and as you have so eloquently written, share your story, and help others.  Thank you so much for sharing!

Ms. Martina,
I am sending you an email I have sent to 2 others in hopes to build up the info I am needing to do just that. If I can explain that it may not be easy to learn how to handle a situation but that without a careful conversation one can never know. I have had many first episodes that have caused me to come forward with a Dr. But never have I ever went all out. Many won't. With that being said without trying it can never get off the ground to helping heal at least a few. 
It is my hope that I can help that change with Drs. There are so many avenues one can go with the info. The main direction I would love to go is for any healthcare professionals to have knowledge for ACEs influence on the quality of life. When someone can go in and explain with an attentive healthcare professional and show the the effect of traumas to quality of life maybe then they could see they have an impact on how they treat the victim. Never do I like saying victim. In this case there are many. Many that either do not know how to find help or that truly can not. No matter what the circumstances their life is as important as anyone else.
The first time I was tested was in an AA meeting I was going to because of a brother in law's addiction. This was one of the first things they shared with me. So then, with much searching for why, I found ACEs Connection. With the information found on this site I have been able to not only help others but also myself in the process. To be able to identify others that have either been abused or are in an abusive home or suffer from some sort of addiction issues has been a gift for me from God. Due to me scoring high on the ACEs test you should know that I had been through much trauma. It started at age 4-5 years old and continued until the age of 18 years. With that has caused many walls to much of the outside world. I have spent most of my life faking till you make it. But a couple of years ago my Dad's health began a down hill spiral and started a world of issues for me. Being diagnosed with anxiety, depression, panic attacks and C-PTSD and several health issues it is very understandable to me how one has major health issues with such trauma. Now it's imperative to make it my goal to explain this to many Healthcare Professionals. 
This being a goal, now what I need to find is the proper information and segway to introduce this to them. If there are any options, ideas or opinions I am open to them. I can also say that sometimes what one sees as trauma to them may not be to another. i.e. what hurts or bothers one may not someone else. That being said I feel to also show that side of it to whom ever I introduce this to. Reason for this is my brother in law did not have the traumas growing up that I did. He came from a great family His came from a break up that he did not know how to handle. He was not taught how to take rejection, partially because he came late in life, 16 years after the first child. He covered the pain with alcohol then drugs. He died last November due to both. His parents do not know this. He had 2 failed marriages and left behind 2 small children. His whole family was devastated. He was a genius but could not handle rejection of any kind. He did not believe he had a problem or that genetically had an addiction gene. So he sought help in other ways that in the end took his life. It needs to be shown that the ACEs scores help so much and so many but just because they can not find the answers do not mean there is not one. So rather than put a band-aid on a problem like medications, let's find other ways of handling their health. 
Now I am just a low person on a very tall totem pole and understand that it may be difficult to push this. But I can say I do have friends high on that totem pole and hopefully they can help. I do not claim to have answers to my problems or others. That is why I, myself am in therapy. But I can say if someone would have had an idea that I may have these kind of problems as an adult and could have helped I truly believe they would have. So we all have to start somewhere.
If you or anyone could help in this endeavor for me please email me. I would love to hear them. This is a first for me to go out into the world with not just for others but for myself also. We never know who it could help or even save.
Thank you for your time. Have a safe a happy day.
Sincerely,Treva Massey


On Wednesday, April 22, 2020, 01:07:38 PM CDT, ACEsConnection <communitymanager@acesconnection.com> wrote:

Comment By Martina Jelley: Erasing My ACES
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This is powerful and hard to read.  But I thank you so much for sharing.  Those of us in primary care who are working with adults with ACEs are all trying to figure out how to incorporate a childhood trauma conversation into our care without causing harm.  This is all so new, at least in the primary care world - there are lots of mistakes being made and we don't really know what "best practices" are right now.  And certainly the approach will vary a lot from patient to patient.  My group here in Tulsa are trying to learn and are teaching health professionals - first by just being aware of the science and listening to patients and clinicians about their experiences.  An across the board screening and ACE score documentation in a patient's chart is not the best practice - especially without adequate training of all clinic staff in ACEs science and how to respond and not sure even then.  We encourage our trainees to have a conversation - not counting up an ACE score - especially with patients who have multiple chronic diseases, who are using maladaptive coping mechanisms (smokers, for instance), or just the patient who is not responding to treatment.  We frame it as trying to understand the origins of the patient's symptoms/problems in order to take better care of them.  We are learning and adapting our teaching all the time.  Hearing stories from patients like you is very helpful.  Thank you!
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Dear Allison,
It is my hope that I can help that change with Drs. There are so many avenues one can go with the info. The main direction I would love to go is for any healthcare professionals to have knowledge for ACEs influence on the quality of life. When someone can go in and explain with an attentive healthcare professional and show the the effect of traumas to quality of life maybe then they could see they have an impact on how they treat the victim. Never do I like saying victim. In this case there are many. Many that either do not know how to find help or that truly can not. No matter what the circumstances their life is as important as anyone else.
The first time I was tested was in an AA meeting I was going to because of a brother in law's addiction. This was one of the first things they shared with me. So then, with much searching for why, I found ACEs Connection. With the information found on this site I have been able to not only help others but also myself in the process. To be able to identify others that have either been abused or are in an abusive home or suffer from some sort of addiction issues has been a gift for me from God. Due to me scoring high on the ACEs test you should know that I had been through much trauma. It started at age 4-5 years old and continued until the age of 18 years. With that has caused many walls to much of the outside world. I have spent most of my life faking till you make it. But a couple of years ago my Dad's health began a down hill spiral and started a world of issues for me. Being diagnosed with anxiety, depression, panic attacks and C-PTSD and several health issues it is very understandable to me how one has major health issues with such trauma. Now it's imperative to make it my goal to explain this to many Healthcare Professionals. 
This being a goal, now what I need to find is the proper information and segway to introduce this to them. If there are any options, ideas or opinions I am open to them. I can also say that sometimes what one sees as trauma to them may not be to another. i.e. what hurts or bothers one may not someone else. That being said I feel to also show that side of it to whom ever I introduce this to. Reason for this is my brother in law did not have the traumas growing up that I did. He came from a great family His came from a break up that he did not know how to handle. He was not taught how to take rejection, partially because he came late in life, 16 years after the first child. He covered the pain with alcohol then drugs. He died last November due to both. His parents do not know this. He had 2 failed marriages and left behind 2 small children. His whole family was devastated. He was a genius but could not handle rejection of any kind. He did not believe he had a problem or that genetically had an addiction gene. So he sought help in other ways that in the end took his life. It needs to be shown that the ACEs scores help so much and so many but just because they can not find the answers do not mean there is not one. So rather than put a band-aid on a problem like medications, let's find other ways of handling their health. 
Now I am just a low person on a very tall totem pole and understand that it may be difficult to push this. But I can say I do have friends high on that totem pole and hopefully they can help. I do not claim to have answers to my problems or others. That is why I, myself am in therapy. But I can say if someone would have had an idea that I may have these kind of problems as an adult and could have helped I truly believe they would have. So we all have to start somewhere.
If you or anyone could help in this endeavor for me please email me. I would love to hear them. This is a first for me to go out into the world with not just for others but for myself also. We never know who it could help or even save.
Thank you for your time. Have a safe a happy day.
Sincerely,Treva Massey

On Wednesday, April 22, 2020, 03:05:55 PM CDT, Treva Massey <treva.massey@yahoo.com> wrote:

Dear Allison,
I have sent this email to someone else but also copied and pasted it to your email so I can get this out as far and to as many as possible. Please read and hopefully you or someone you know can help.


On Wednesday, April 22, 2020, 02:33:11 PM CDT, ACEsConnection <communitymanager@acesconnection.com> wrote:

Comment By Alison Cebulla (ACEs Connection Staff): Erasing My ACES
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"Years after erasing my ACES, they were gently reintroduced to me during a consultation. Being treated with compassion and given an explanation, I began to understand how the study, and my score, can help me to be more prepared and aware of my personal risks. Honestly, the more I read about it, the more I fell in love with the appropriate use of the ACE study. It served, not only as assessment of my risks, but as a validation of my successes."

I love this! It's so sad that this wasn't how ACEs were first presented. Medical providers can be rushed, abrasive, and dehumanizing, even when they don't mean to be. A patient, present, and kind one can be tough to find.

Thank you for this vulnerable share. 
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Dear Allison,
I have sent this email to someone else but also copied and pasted it to your email so I can get this out as far and to as many as possible. Please read and hopefully you or someone you know can help.


On Wednesday, April 22, 2020, 02:33:11 PM CDT, ACEsConnection <communitymanager@acesconnection.com> wrote:

Comment By Alison Cebulla (ACEs Connection Staff): Erasing My ACES
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| Subject: Erasing My ACES Comment By: Alison Cebulla (ACEs Connection Staff) | |


"Years after erasing my ACES, they were gently reintroduced to me during a consultation. Being treated with compassion and given an explanation, I began to understand how the study, and my score, can help me to be more prepared and aware of my personal risks. Honestly, the more I read about it, the more I fell in love with the appropriate use of the ACE study. It served, not only as assessment of my risks, but as a validation of my successes."

I love this! It's so sad that this wasn't how ACEs were first presented. Medical providers can be rushed, abrasive, and dehumanizing, even when they don't mean to be. A patient, present, and kind one can be tough to find.

Thank you for this vulnerable share. 
  View This Comment ACEsConnection https://www.pacesconnection.com To adjust your email notifications for this site, please update your notification settings. To suspend ALL email notifications from this site, click here. |

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Dear Patricia,
It is my hope that I can help that change with Drs. There are so many avenues one can go with the info. The main direction I would love to go is for any healthcare professionals to have knowledge for ACEs influence on the quality of life. When someone can go in and explain with an attentive healthcare professional and show the the effect of traumas to quality of life maybe then they could see they have an impact on how they treat the victim. Never do I like saying victim. In this case there are many. Many that either do not know how to find help or that truly can not. No matter what the circumstances their life is as important as anyone else.
The first time I was tested was in an AA meeting I was going to because of a brother in law's addiction. This was one of the first things they shared with me. So then, with much searching for why, I found ACEs Connection. With the information found on this site I have been able to not only help others but also myself in the process. To be able to identify others that have either been abused or are in an abusive home or suffer from some sort of addiction issues has been a gift for me from God. Due to me scoring high on the ACEs test you should know that I had been through much trauma. It started at age 4-5 years old and continued until the age of 18 years. With that has caused many walls to much of the outside world. I have spent most of my life faking till you make it. But a couple of years ago my Dad's health began a down hill spiral and started a world of issues for me. Being diagnosed with anxiety, depression, panic attacks and C-PTSD and several health issues it is very understandable to me how one has major health issues with such trauma. Now it's imperative to make it my goal to explain this to many Healthcare Professionals. 
This being a goal, now what I need to find is the proper information and segway to introduce this to them. If there are any options, ideas or opinions I am open to them. I can also say that sometimes what one sees as trauma to them may not be to another. i.e. what hurts or bothers one may not someone else. That being said I feel to also show that side of it to whom ever I introduce this to. Reason for this is my brother in law did not have the traumas growing up that I did. He came from a great family His came from a break up that he did not know how to handle. He was not taught how to take rejection, partially because he came late in life, 16 years after the first child. He covered the pain with alcohol then drugs. He died last November due to both. His parents do not know this. He had 2 failed marriages and left behind 2 small children. His whole family was devastated. He was a genius but could not handle rejection of any kind. He did not believe he had a problem or that genetically had an addiction gene. So he sought help in other ways that in the end took his life. It needs to be shown that the ACEs scores help so much and so many but just because they can not find the answers do not mean there is not one. So rather than put a band-aid on a problem like medications, let's find other ways of handling their health. 
Now I am just a low person on a very tall totem pole and understand that it may be difficult to push this. But I can say I do have friends high on that totem pole and hopefully they can help. I do not claim to have answers to my problems or others. That is why I, myself am in therapy. But I can say if someone would have had an idea that I may have these kind of problems as an adult and could have helped I truly believe they would have. So we all have to start somewhere.
If you or anyone could help in this endeavor for me please email me. I would love to hear them. This is a first for me to go out into the world with not just for others but for myself also. We never know who it could help or even save.
Thank you for your time. Have a safe a happy day.
Sincerely,Treva Massey

On Wednesday, April 22, 2020, 10:23:09 AM CDT, ACEsConnection <communitymanager@acesconnection.com> wrote:

Comment By patricia mininni: Erasing My ACES
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Thank you for sharing your experience that many will relate to.  I don't have an ACE score because I never filled out a questionnaire.  I can tell you this though when being asked about my history, the minute I divulged just a little information that could have been a red flag to a trained, compassionate, knowledgeable professional, turned out to be just words that were quickly dismissed with a sympathetic nod and the conversation returned to the "medical" problem. 

I am so grateful that ACE has come into existence because it helps to address the "whole" person who is basically seeking to become whole.  Until this permeates the medical profession and the professionals embrace it as a necessary tool in treating the whole person, we are going to have to rely on stories from the trenches.  Just living in this world is traumatic, nevermind the added trauma inflicted on innocent victims who were too young to defend themselves.  We need to hear from people, like yourself,  who have high ace scores and have learned to face down their demons and overcome a block/barrier one at a time.  Let's teach people "how to" rewrite their script.  Not everyone can afford to see a therapist in a field where "trauma" therapists are few and far between.  Also, many people lose their therapists if they lose their health insurance or the therapist leaves a particular agency. 

Success stories help.  They give options, but most of all they provide HOPE.  
  View This Comment ACEsConnection https://www.pacesconnection.com To adjust your email notifications for this site, please update your notification settings. To suspend ALL email notifications from this site, click here. |

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"Years after erasing my ACES, they were gently reintroduced to me during a consultation. Being treated with compassion and given an explanation, I began to understand how the study, and my score, can help me to be more prepared and aware of my personal risks. Honestly, the more I read about it, the more I fell in love with the appropriate use of the ACE study. It served, not only as assessment of my risks, but as a validation of my successes."

I love this! It's so sad that this wasn't how ACEs were first presented. Medical providers can be rushed, abrasive, and dehumanizing, even when they don't mean to be. A patient, present, and kind one can be tough to find.

Thank you for this vulnerable share. 

This is powerful and hard to read.  But I thank you so much for sharing.  Those of us in primary care who are working with adults with ACEs are all trying to figure out how to incorporate a childhood trauma conversation into our care without causing harm.  This is all so new, at least in the primary care world - there are lots of mistakes being made and we don't really know what "best practices" are right now.  And certainly the approach will vary a lot from patient to patient.  My group here in Tulsa are trying to learn and are teaching health professionals - first by just being aware of the science and listening to patients and clinicians about their experiences.  An across the board screening and ACE score documentation in a patient's chart is not the best practice - especially without adequate training of all clinic staff in ACEs science and how to respond and not sure even then.  We encourage our trainees to have a conversation - not counting up an ACE score - especially with patients who have multiple chronic diseases, who are using maladaptive coping mechanisms (smokers, for instance), or just the patient who is not responding to treatment.  We frame it as trying to understand the origins of the patient's symptoms/problems in order to take better care of them.  We are learning and adapting our teaching all the time.  Hearing stories from patients like you is very helpful.  Thank you!

Thank you for sharing your experience that many will relate to.  I don't have an ACE score because I never filled out a questionnaire.  I can tell you this though when being asked about my history, the minute I divulged just a little information that could have been a red flag to a trained, compassionate, knowledgeable professional, turned out to be just words that were quickly dismissed with a sympathetic nod and the conversation returned to the "medical" problem. 

I am so grateful that ACE has come into existence because it helps to address the "whole" person who is basically seeking to become whole.  Until this permeates the medical profession and the professionals embrace it as a necessary tool in treating the whole person, we are going to have to rely on stories from the trenches.  Just living in this world is traumatic, nevermind the added trauma inflicted on innocent victims who were too young to defend themselves.  We need to hear from people, like yourself,  who have high ace scores and have learned to face down their demons and overcome a block/barrier one at a time.  Let's teach people "how to" rewrite their script.  Not everyone can afford to see a therapist in a field where "trauma" therapists are few and far between.  Also, many people lose their therapists if they lose their health insurance or the therapist leaves a particular agency. 

Success stories help.  They give options, but most of all they provide HOPE.  

Vladimir Enlow posted:

I'm truly amazed... and horrified. I've never seen the ACEs questionnaire or mechanism used like this, to label would-be patients as hopeless cases and pass them off to other providers like so much unwanted holiday fruitcake. 

The healthcare network Sirena initially used seems so focused on "measurable outcomes"... I wonder if they've made the connection between treatment dropouts and noncompliance with the institutional and professional bias they show towards people with past trauma. Their poor "bedside manner", if you will.

I could go on like this all day, but I'll keep it brief: Sirena is to be commended for taking charge of her treatment and seeking out people who can help her when confronted with people who can't or won't . But I worry about people who don't have her resilience and don't seek further help because a so-called expert treated them like an untouchable.

 

 

 

“Holiday fruitcake”-LOL! Pretty much.

Like you, I am also concerned for those who don’t have the resilience to seek further help. There are resources out there, and it’s so important to connect them to people in need.

Last edited by Sirena Wheeler
Laura E Porter posted:

Dear Sirena,

I admire your courage and ability to express such difficult experiences.  No person should ever have to endure a health professional, or any other human being, using an ACE Score to label them or assess personal risk.  The ACE Score is a tool that was developed to learn about groups of people - it is a population tool. ACE Scores have many good uses - to build relationship, increase compassion, monitor how well our society is supporting parenting adults as they work to protect their chilldren, and many more -- but clinical screening is not one of those uses.

An ACE Score is not predictive at the individual level, and should never be used to guide treatment decisions at an individual level.  Dr. Rob Anda recently released a video explaining the reasons that the practice that you describe at the beginning of your post are a misapplication of his study findings (https://www.youtube.com/watch?v=Kfx5vOHFfxACs).  Followers of this blog will be interested to understand more about how to stand up against the practices of labeling by ACE Score or using a score to predict anything about a single person's life.  ACEs are not destiny.

Those of us who teach about ACEs and related science (we nicknamed that NEAR: neuroscience, epigenetics, ACE, resilient communities) are working to eliminate shame and blame, and to support everyone in understand that our brains and bodies adapt to experience.  That adaptation brings strengths and makes us the unique and sacred persons that we are. 

I wish for you a lifetime filled with people who are curious about your being, loving and kind, and appreciative of your core gifts.  None of these things requires knowing your ACE Score or your Resilience Score.  I hope that your blog is circulated widely so people begin to understand how not to use an ACE Score.  Thank you for your clear and compelling writing.

Best wishes and take care,

Laura Porter

Thank you for such a clear explanation and link. And for teaching and shaping thinking about ACES and related. The neuroscience and epigenetic information and research is something I am really interested in; it’s just fascinating. Thank you for your beautiful words!

Cissy White (ACEs Connection Staff) posted:

Sirena:
THANK YOU for posting and sharing your experiences. This was hard to read. I could feel the mood shift via your writing.

"The quick, assured solutions offered to me just moments before evaporated, leaving a bare recognition that I am a long-suffering human, who is just suffering a little more in a particular area at the moment. No future, only a product of my past."

And this too. " It was hinted that answering in the positive would only allow the physician to pass more responsibility for my care on to others in my medical team because the lifestyle complexities meant that it was “not their department.” Crestfallen, with no offer of support, I alone was responsible for the coordinating of my care."

I think it's way too easy to get into a for or against ACEs simplistic screening argument when the reality is more varied and complex. Even in our own lives and our own experiences, many of us have positive and negative experiences around ACEs. We may find empowerment and healing and also have been hurt and had to "erase" ACEs, as you say, in order to get non-biased treatment and care.  

I know I've found epic benefits from understanding and changing the narrative in my own head and heart around my own past experiences, struggles, successes, and risks, personally as well as generationally. I know I've experienced amazing self-compassion, respect, and understanding how childhood varies so significantly and how much impact that has. And I've wanted to parent in ways more protective so my child can have the advantages those with low ACEs can have.

Despite that and my work, I've only had one positive experience in a medical setting talking about past trauma. Usually, sharing leads to being treated with less care, compassion, dignity or be written off or discriminated against when someone only sees a diagnosis or a label which can be PTSD, an abuse history, or high ACEs. Or, sometimes, the discomfort of the provider is so palpable that it permeates all else. 

I've shared about my ACEs with a functional medicine NP who I had an hour with. I did that only after she gave space, respect, and shared info. with me. It was the best appointment I ever had and made me feel spectacular, seen, and motivated me to get more invested in my own wellness. But often, sharing has been met with confusion, ignorance, or people over assuming and under assessing the cause of health issues.

For me, the sharing that has been most possible has happened outside of medical settings with family, friends, survivor circles and parents.  

THANK you for sharing and saying what you have experienced, what you found hurtful, as well as helpful, and for helping others understand that as well. Thank you for being so clear about what is most helpful.

This is SO powerful:

"Really, I just want to be asked what I need. It is this: To have my painful foundations acknowledged, and to have a little, just a very little of the resulting difficulties, shared out with each medical professional on my established team. I am doing my utmost to work consistently towards my own health. I would love to partner with professionals who support me to continue without discrimination and barriers."

And I love how hopeful you remain that sharing your ACEs can and might be a source of positive and powerful experiences. And that your own understanding and healing are happening even before that has happened. YAHOO TO YOU!!! KUDOS! WELL DONE!!

You show that it's not the content of what is shared, but the relationship and context and context of the relationship and information, internally and in relationships with others, that matters the most.

While many hope and maybe assume a trauma-informed setting would always be safe, compassionate, equitable, etc. that assumption has to be checked and compared with the real experiences of people with ACEs, in patient settings, not just what providers say, intend, and report.

There are lots of past and present experiences showing that equity, respect, compassion and good care result from sharing about the cause and impact of traumatic stress from ACEs as well as other neglect, violence, and injustice. Hopefully, things will change, people will change, systems will change. But, til then, sometimes it's safe and wise to erase our ACEs in some settings, in order to get the best treatment.

Still, we can learn from ACEs information in settings that are safe, and join and lead conversations about what matters most to those most likely to be most impacted by screening. 
Warmly,
Cissy

Ms. Cissy,

I agree with your response and feel it most important to let other high ACE score people know that they cannot stop at the disagreement of professionals to hinder them from getting the help they need. Not everyone is resilent but with the knowledge they get from those that have struggled with and have made it through maybe the can gain the strength they need to do the same. When one doe not listen move on to another. Some say that is Dr shopping, I feel it is finding the right Dr that listens thouroughly.

Thank you,

Treva

        Ms. Sirena, I totally understand your situation with Drs and therapist. I will be turning 54 years old next month and most of my life I have been able to keep back all of the trauma I've received. Unlike you I did have good Drs that I finally found that understood the situation I was in periodically and really didn't have a good therapist they could send me to so I learned how to manage without help by studying phsycology and other ways to handle what I needed to to make it through my struggles. Finally, about 4 weeks ago I found a wonderful therapist. At first I tested him to even see if he could help me and no matter what I threw at him he had the perfect answers. He did say that it would not be an easy nor quick process because I have so much my mind is trying to bring forward and release, My ACE score is about as high as you can get, and then some it feels. But he said with my agreement to work on this he would be able to find ways to deal with the immediate things and then start trying to bring those traumas forward so they couldn't have the hold they have over me.

          My falling apart came about 2 years ago brought on by the health of my father. And this therapist has been great with handling these struggles. It is not often we, as high ACE scores people, have an opportunity to have someone truly understand what we are going through daily. I feel your pain in having to start over with how you had to present your health just so you could get the help you needed. I recently went to the ER for an asthma attack and they didn't want to do much due to the fact I smoked and they shamed me. So the gave me a treatment and a shot and allowed me to go home with an O2 of 92%. That was at 8am. By 8pm I ended up in another county at their ER at 84% O2. They then admitted me and could not belive I was admitted previously. Due to the short comings of Drs that can't see the forest for the trees I almost died. These are the reasons so many do not seek help. The system does not know how to handle ACE in any form. They are not informed at the causes and most do not want to know. Today I am blessed with having a very thourough Dr and a great therapist. It sure has taken long enough. Now maybe I can get towards a healing rather than hiding. 

        Thank you so much for letting others know that they are not alone in these struggles. Most people belive what the Drs tell them. Me, I'm an investigator. So though it took many years to find the right one I'm glad I did not give up and I'm glad you did not either.

GOD BLESS!

       

I'm truly amazed... and horrified. I've never seen the ACEs questionnaire or mechanism used like this, to label would-be patients as hopeless cases and pass them off to other providers like so much unwanted holiday fruitcake. 

The healthcare network Sirena initially used seems so focused on "measurable outcomes"... I wonder if they've made the connection between treatment dropouts and noncompliance with the institutional and professional bias they show towards people with past trauma. Their poor "bedside manner", if you will.

I could go on like this all day, but I'll keep it brief: Sirena is to be commended for taking charge of her treatment and seeking out people who can help her when confronted with people who can't or won't . But I worry about people who don't have her resilience and don't seek further help because a so-called expert treated them like an untouchable.

 

 

 

Dear Sirena,

I admire your courage and ability to express such difficult experiences.  No person should ever have to endure a health professional, or any other human being, using an ACE Score to label them or assess personal risk.  The ACE Score is a tool that was developed to learn about groups of people - it is a population tool. ACE Scores have many good uses - to build relationship, increase compassion, monitor how well our society is supporting parenting adults as they work to protect their chilldren, and many more -- but clinical screening is not one of those uses.

An ACE Score is not predictive at the individual level, and should never be used to guide treatment decisions at an individual level.  Dr. Rob Anda recently released a video explaining the reasons that the practice that you describe at the beginning of your post are a misapplication of his study findings (https://www.youtube.com/watch?v=Kfx5vOHFfxACs).  Followers of this blog will be interested to understand more about how to stand up against the practices of labeling by ACE Score or using a score to predict anything about a single person's life.  ACEs are not destiny.

Those of us who teach about ACEs and related science (we nicknamed that NEAR: neuroscience, epigenetics, ACE, resilient communities) are working to eliminate shame and blame, and to support everyone in understand that our brains and bodies adapt to experience.  That adaptation brings strengths and makes us the unique and sacred persons that we are. 

I wish for you a lifetime filled with people who are curious about your being, loving and kind, and appreciative of your core gifts.  None of these things requires knowing your ACE Score or your Resilience Score.  I hope that your blog is circulated widely so people begin to understand how not to use an ACE Score.  Thank you for your clear and compelling writing.

Best wishes and take care,

Laura Porter

Wow, Sirena, Thank you so much for expressing what many of us have felt - not being seen, or heard, or prejudged and then written off. You are a masterful writer! You were able to share your experiences with healthcare providers, -"A label simply summarizes, “Here is a victim, likely difficult or impossible to succeed with any treatment.” Assume the worst of her lifestyle and ability to cope, offer the least in treatments- she is likely already overtaxing the system. Keep her from affecting the measurable outcomes of your practice." within the context of a survivor and a thriver! "My triumphs need to be held in honor, my ability to survive viewed as an empowerment." I am deeply grateful for your bravery in sharing such an important message and exemplary learning opportunities for healthcare providers and for all of us - as we navigate a world among so many who are struggling. " ... a beacon of hope, shining light on just how far I have had to come and that my journey is worthy of celebration.". Karen 

“-understanding and changing the narrative in my own head and heart around my own past experiences, struggles, successes, and risks, personally as well as generationally.”

Can you tell me a little about how this looked for you, Cissy?

Thank you so much for the thoughtful interaction and encouragement!

Sirena:
THANK YOU for posting and sharing your experiences. This was hard to read. I could feel the mood shift via your writing.

"The quick, assured solutions offered to me just moments before evaporated, leaving a bare recognition that I am a long-suffering human, who is just suffering a little more in a particular area at the moment. No future, only a product of my past."

And this too. " It was hinted that answering in the positive would only allow the physician to pass more responsibility for my care on to others in my medical team because the lifestyle complexities meant that it was “not their department.” Crestfallen, with no offer of support, I alone was responsible for the coordinating of my care."

I think it's way too easy to get into a for or against ACEs simplistic screening argument when the reality is more varied and complex. Even in our own lives and our own experiences, many of us have positive and negative experiences around ACEs. We may find empowerment and healing and also have been hurt and had to "erase" ACEs, as you say, in order to get non-biased treatment and care.  

I know I've found epic benefits from understanding and changing the narrative in my own head and heart around my own past experiences, struggles, successes, and risks, personally as well as generationally. I know I've experienced amazing self-compassion, respect, and understanding how childhood varies so significantly and how much impact that has. And I've wanted to parent in ways more protective so my child can have the advantages those with low ACEs can have.

Despite that and my work, I've only had one positive experience in a medical setting talking about past trauma. Usually, sharing leads to being treated with less care, compassion, dignity or be written off or discriminated against when someone only sees a diagnosis or a label which can be PTSD, an abuse history, or high ACEs. Or, sometimes, the discomfort of the provider is so palpable that it permeates all else. 

I've shared about my ACEs with a functional medicine NP who I had an hour with. I did that only after she gave space, respect, and shared info. with me. It was the best appointment I ever had and made me feel spectacular, seen, and motivated me to get more invested in my own wellness. But often, sharing has been met with confusion, ignorance, or people over assuming and under assessing the cause of health issues.

For me, the sharing that has been most possible has happened outside of medical settings with family, friends, survivor circles and parents.  

THANK you for sharing and saying what you have experienced, what you found hurtful, as well as helpful, and for helping others understand that as well. Thank you for being so clear about what is most helpful.

This is SO powerful:

"Really, I just want to be asked what I need. It is this: To have my painful foundations acknowledged, and to have a little, just a very little of the resulting difficulties, shared out with each medical professional on my established team. I am doing my utmost to work consistently towards my own health. I would love to partner with professionals who support me to continue without discrimination and barriers."

And I love how hopeful you remain that sharing your ACEs can and might be a source of positive and powerful experiences. And that your own understanding and healing are happening even before that has happened. YAHOO TO YOU!!! KUDOS! WELL DONE!!

You show that it's not the content of what is shared, but the relationship and context and context of the relationship and information, internally and in relationships with others, that matters the most.

While many hope and maybe assume a trauma-informed setting would always be safe, compassionate, equitable, etc. that assumption has to be checked and compared with the real experiences of people with ACEs, in patient settings, not just what providers say, intend, and report.

There are lots of past and present experiences showing that equity, respect, compassion and good care result from sharing about the cause and impact of traumatic stress from ACEs as well as other neglect, violence, and injustice. Hopefully, things will change, people will change, systems will change. But, til then, sometimes it's safe and wise to erase our ACEs in some settings, in order to get the best treatment.

Still, we can learn from ACEs information in settings that are safe, and join and lead conversations about what matters most to those most likely to be most impacted by screening. 
Warmly,
Cissy

Carey, “The rule rather than the exception-“ Yes! Thank you so much for your kind words. I sincerely appreciate the understanding. I have joined some of the communities, and I do see a lot of resiliency questionnaires that are new to me. 

Thank you Sirena, for this beautifully written and thoughtful piece. You have a lot to celebrate and we who have survived and done well despite our traumas need to be the rule rather than the exception. 

 It is interesting and sad to me that you were asked the questions for the survey somewhere along the way and not informed about it, and that that is how your score got into your medical records. I hate that you endured “the looks” and the dismissal when docs saw your score. Mercy. As if being at the doctor’s office isn’t enough stress, to go from being encouraged to being made less-than in a glance would be crushing to anyone. It would sure add stress to my immune system. 

Have you ever answered questions on a resiliency questionnaire? https://www.pacesconnection.com...t-resilience-surveys Doing so may help you identify some positive influences from your past. I hope there was a grandparent or a teacher in there who stepped up for you. Whether there was or not, it sounds as though you’ve done a great job of figuring out how to take care of yourself despite a rough start in life. I agree wholeheartedly with how you say it means we “did not have the same starting point.” 

Peace and thank you for this share. Especially at this time in our lives and history, it is important to be aware of all the self-care tools possible. Please check out the “communities” tab on the top bar of the website, and see if there are some resiliency related communities you’d like to join. 

Thanks again for taking the time to write and share. 

Carey Sipp

SE Regional Community Facilitator

ACEs Connection 

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