The Neuroscience of Being Believed: A Biology Nerd’s Journey to Evidence-Based Self-Advocacy In Medicine

I’m such a biology nerd and consider my life one long experiment that I have done things like this.

In the past 7 years, I have tracked large quantities of personal bio data. It quantifies my struggles and progress as I deal with a disease management industry that questions my lived experience and doubts my comprehension.

These graphs show the results of my pain level tracking before and after my first Bilateral Occipital Nerve Block, on August 15, 2022.

I did this in large part because the disease management industry would not recognize what I understood about my nervous system. I had to prove it.

I was driven to this extreme by a pain specialist who had promised to help me but then had his nurse tell me he wasn’t comfortable giving me any treatment except medications–although I had made it clear, I am not up for those–until I went through a Johns Hopkins Pain Clinic consultation and got clearance from the clinic.

This put me through an arduous and stressful journey to the consultation while simultaneously depriving me of a simple and quick procedure that would have given me rapid, significant, and sustained relief.

But doctor Rowlands couldn’t believe or even hear me. I was talking about neuroscience, and the pain specialist couldn’t comprehend. It was absent from his schooling.

Unfortunately, I had previously established care at another pain clinic. With its two-star rating confirmed by my first visit, I did not want to return, but I was desperate enough to try it again.

Very fortunately, because I’d had my records transferred from my wonderful first pain specialist, a bright, young, kind, and curious pain specialist became my new doctor. He walked into the room in such a ventral vagal (pro-social) state that it was like someone turned on the sun.

This doctor was fascinated by my case and excitedly told me he wanted to learn.

After this doctor gave me the care I needed–the occipital block, combined with his attunement, empathy, and compassion–I made up these graphs to illustrate my lived experience.

These quantify my pain levels and correlate them with the treatment. However, there’s no way to determine how much of my improved pain levels were due to the nerve block itself versus the experience of finally getting the level of care I desperately needed.

I’ve been seeing this doctor fairly regularly for about 2-1/2 years. He has provided a steady and reliable presence that has helped rebuild my sense of safety in medicine, with men, and people in general. We have developed a unique rapport that is warm, kind, understanding, and a little playful. He always gives me the time and focus I need, demonstrates that he has learned a great deal, and puts it into practice during our interactions. This kind of doctor-patient relationship–one that is integrated–is a key resource in my ability to recover. It also helps my doctor maintain homeostasis and informs how he interacts with all of his patients.

Understanding my neurobiology doesn’t just make this crazy life more tolerable; it helps me save it and change the way pain and trauma are treated.

About Shay Seaborne, CPTSD

Shay Seaborne CPTSD teaches Relational Neuroscience for stress reduction, trauma recovery, and community building. Shay has studied the neurobiology of fear / trauma /PTSD since 2014 and Interpersonal Neurobiology (IPNB) since 2019. They write, speak, teach, and make art to convey their experiences as well as their understanding of the neurobiology of fear, trauma theory, Interpersonal Neurobiology concepts, and principles of trauma recovery. A native of Northern Virginia, Shay settled in Delaware to sail KALMAR NYCKEL, the state’s tall ship. But once they finally had mental health insurance, their life rapidly changed. The standard treatment for PTSD nearly killed them. The psychiatric abuse began a cascade of negative medical encounters that repeatedly caused additional harm and the development of severe Medical PTSD. Shay wishes everyone could recognize that "mental health problems" are symptoms of dysregulation, our mainstream culture is neuro-negative, and we can heal ourselves and each other through awareness, understanding, and safe connection.
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