Putting Our Lived Experience on the Record Can Help Build a Sense of Safety

I started bringing a printed page to my pain specialist appointments because I needed a way to communicate that worked for my nervous system and his. Each page bears the date and his name, plus brief status updates on regional pain, symptom intensity, setbacks, social support, and positive shifts. I highlight what feels most important for that visit. The rest is context. Not everything needs to be discussed that day, but it matters that it exists.

I hand the paper to his assistant so my doctor can read it in advance of our meeting. That alone changes the tone of the visit. He walks into the room already oriented. He has a picture of what he is stepping into. We have shared reference points. Sometimes we talk through the highlights. Sometimes we don’t. Either way, the information is there.

I also ask my doctor’s assistant to scan the document into the medical record. I don’t know that they always do it, but I reinforce why I ask. Knowing that my lived experience is in the record matters to my system. It means what I am living with is not just carried privately in my body or relayed imperfectly in a rushed conversation. It is official. It exists outside of me. Even if we never talk about it, it is there.

This has a regulatory effect. When experience is witnessed and recorded, my nervous system does not have to work as hard to hold it together. There is less pressure to remember everything, to perform coherence on demand, or to compress complexity into a few sentences. The record holds continuity when the body is already doing a lot of work.

I work to make the handout succinct. A busy doctor does not need an essay. He needs clarity. That structure helps both of us. It also creates natural talking points. My pain specialist wants to learn, and this is one way he can build his understanding of Relational Neuroscience. The papers contain no identifying information, so he can share them, use them in study groups, or post them in forums if they are useful. I don’t know how often that happens, but I notice that he keeps the papers I offer.

This is important because care is relational. Every interaction teaches the nervous system something about safety, predictability, and repair. When a clinician engages with material like this seriously, it signals respect for lived experience. That signal reduces threat. It also reduces the need for vigilance during the appointment itself.

Our visits are intentionally at the end of the day. No one is waiting for him while he talks with me. I don’t mind waiting for him. He is worth it. That arrangement makes the interaction workable for both of us. Not every clinician can or will do this, but everyone living with chronic illness needs at least one practitioner with whom this kind of continuity is possible.

This support did not happen by luck. I had to figure out what I needed and build toward it, slowly and deliberately. I paid attention to what helped my nervous system feel steadier and what made things worse. I made a plan and kept trying. Over time, I found practitioners who could be safe for me.

I share practices like this so others don’t have to learn them the hard way. No one should have to spend years figuring out how to make care tolerable. Relational Neuroscience/IPNB principles can be implemented gradually, repeatedly, and with respect for current limits. When lived experience is held in a reliable place, the nervous system does less work just to get through the day. That alone can change one’s life trajectory.

About Shay Seaborne, CPTSD

Former tall ship sailor turned trauma awareness activist-artist Shay Seaborne, CPTSD has studied the neurobiology of fear / trauma /PTSD since 2015. She writes, speaks, teaches, and makes art to convey her experiences as well as her understanding of the neurobiology of fear, trauma theory, and principles of trauma recovery. A native of Northern Virginia, Shay settled in Delaware to sail KALMAR NYCKEL, the state’s tall ship. She wishes everyone could recognize PTSD is not a mental health problem, but a neurophysiological condition rooted in dysregulation, our mainstream culture is neuro-negative, and we need to understand we can heal ourselves and each other through awareness, understanding, and safe connection.
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