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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Sirena,

Thank you for this -- such authentic sharing of how ACEs can be misused! So many of us parenting children impacted by trauma and those with high ACEs could echo similar "victim" identification that led no where for treatment 10 or 20 years ago.  I think this was, in part, to being able to identify that ACEs increase health risks, but not knowing trauma-informed ways to help children build resilience.  So much of the therapies until recently had not even been focused on the right parts of the brain (through movement, experiences, building relationships) vs. talk therapy.  

I'm so glad that your ACEs understanding has become a lighthouse, and that you're so bravely sharing that with us all!  Keep being a voice for others who have walked similar paths!

Julie Beem, Executive Director

Attachment & Trauma Network, Inc.

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