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Words have Weight: Labels vs. Life, Part 1a

Patient Track: Being good at makeup, didn’t mean I was well.

Disclaimers.

Professional Standards and Scope:

  • Credentials and expertise: Dr. Stephanie Michelle Nixon is a PhD-level Speech-Language Pathologist and consultant.
  • Educational purpose: The content in this series is shared for informational, educational, and advocacy purposes only.
  • No clinical relationship: Engagement with this content does not constitute medical advice, a clinical diagnosis, or the establishment of a patient-provider relationship.
  • Medical consultation: Always seek the advice of your physician or other qualified health providers with questions regarding a medical condition.

Personal Narrative & Data Integrity:

  • Designated Record Set: This series represents a personal, professional audit of my own legally obtained medical history and “Designated Record Set”.
  • Factual Basis: All clinical data points—including the 169.4-minute gastric emptying result —are pulled directly from my documented clinical records.
  • Advocacy Intent: My goal is to highlight systemic disparities in medical documentation and foster better clinical communication.
  • Non-Defamation: This audit is a critique of the content and quality of documentation and the patterns of clinical bias, rather than an attack on specific individuals or institutions.

A Note on Neurodivergent Baseline:

Contextual Accuracy: Observations regarding communication style, energy, or behavior (often labeled “manic” or “pressured” in my records) must be viewed through the lens of my documented, lifelong ADHD diagnosis.

A ‘u’ was added (AuDHD) as a late diagnosis a few years ago providing a key to understanding why so many providers saw ‘manic’ behavior where there was actually just a neurodivergent person managing a health emergency. We have to stop labeling what we don’t understand.

Image torn in two with objective health statements from visit notes on the left and subjective comments on the right (some that did not match with objective testing)
Which version of you is in your medical record? On the right are the labels found in my permanent charts—words like “typical,” “rushed,” “not sick appearing”, “well groomed”. On the left is the objective data my body was reporting at that exact same time.

Words have weight. After auditing my own medical charts across different institutions, it became obvious just how much weight those words carry—and how they can shadow a patient for decades. And let me say, words can hurt.

During an initial appointment years ago, a provider looked at me and said, “You look well.” My response came quickly: “I’m good at makeup.”

How many of us get up, put on our “mask” (a smile, our makeup, shallow breaths to avoid a cough), and go about our day? I know I did. I watched TikToks to improve my makeup skills while I was getting sicker. I didn’t want the world to see me looking as bad as I felt.

But do we really need to look as bad as we feel for a provider to believe the data? I once showed a provider a photo of myself before I put on my makeup that morning, just so she could see the reality of my physical state. Her response? “Why are you showing me this?”

Looking back, I realize that if a provider needs you to look “sick enough” to believe your symptoms, they aren’t the right provider for you.

Receipts

  • The Science: A specialist was “not convinced” I had a condition, despite a nuclear study providing a 169.4 minute gastric half-time – nearly double the normal limit.
  • The “Well-Appearing” Paradox: My chart once documented me as “well-appearing” and in “no acute distress” while my oxygen saturation was recorded at 65% at room air. (Note. The 65% was likely associated with PVCs.)
  • The “Performance” Label: My cough was described as something I “demonstrated” when I was actually navigating multiple bacterial respiratory infections (including … MAC and Staph).
  • The Missing “u”: My speech was labeled as “pressured,” a psychiatric term that completely ignored my AuDHD baseline (ADHD 1979 / Autism 2024; iykyk).

Audit Your Medical History

  1. Have you ever found a statement in your records that felt more like a character critique than a clinical note?
  2. What is one “label” a provider gave you that was the complete opposite of your reality?
  3. How did it change the way you presented yourself at your next visit?

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Access and advocacy, clinical documentation bias, healthcare communication disparities, invisible illness, medical gaslighting examples, medical record transparency, patient advocacy in healthcare, subjective vs. objective medical notes

Words have Weight: The Mirror Test, Part 1b

Provider Track: Would you want these words in your permanent record?

Disclaimers.

Professional Standards and Scope:

  • Credentials and expertise: Dr. Stephanie Michelle Nixon is a PhD-level Speech-Language Pathologist and consultant.
  • Educational purpose: The content in this series is shared for informational, educational, and advocacy purposes only.
  • No clinical relationship: Engagement with this content does not constitute medical advice, a clinical diagnosis, or the establishment of a patient-provider relationship.
  • Medical consultation: Always seek the advice of your physician or other qualified health providers with questions regarding a medical condition.

Personal Narrative & Data Integrity:

  • Designated Record Set: This series represents a personal, professional audit of my own legally obtained medical history and “Designated Record Set”.
  • Factual Basis: All clinical data points—including the 169.4-minute gastric emptying result —are pulled directly from my documented clinical records.
  • Advocacy Intent: My goal is to highlight systemic disparities in medical documentation and foster better clinical communication.
  • Non-Defamation: This audit is a critique of the content and quality of documentation and the patterns of clinical bias, rather than an attack on specific individuals or institutions.

A Note on Neurodivergent Baseline:

Contextual Accuracy: Observations regarding communication style, energy, or behavior (often labeled “manic” or “pressured” in my records) must be viewed through the lens of my documented, lifelong ADHD diagnosis.

A ‘u’ was added (AuDHD) as a late diagnosis a few years ago providing a key to understanding why so many providers saw ‘manic’ behavior where there was actually just a neurodivergent person managing a health emergency. We have to stop labeling what we don’t understand.

Clinical documentation bias infographic by Dr. Stephanie Nixon. A split-screen visual titled "Bias in chart notes" contrasting subjective provider labels like "somatization" and "well appearing" with objective medical receipts like "MAC and Staph pneumonia," "169.4-minute gastric half-time". This visual illustrates <span class=medical gaslighting and the importance of accurate, data-driven medical records for neurodivergent (AuDHD) patients." class="wp-image-967" srcset="https://nixonspeechandlanguage.com/wp-content/uploads/2026/05/Case-Study-Bias-in-chart-notes-1024x1003.png 1024w, https://nixonspeechandlanguage.com/wp-content/uploads/2026/05/Case-Study-Bias-in-chart-notes-300x294.png 300w, https://nixonspeechandlanguage.com/wp-content/uploads/2026/05/Case-Study-Bias-in-chart-notes-768x752.png 768w, https://nixonspeechandlanguage.com/wp-content/uploads/2026/05/Case-Study-Bias-in-chart-notes-1536x1505.png 1536w, https://nixonspeechandlanguage.com/wp-content/uploads/2026/05/Case-Study-Bias-in-chart-notes-2048x2006.png 2048w" sizes="(max-width: 1024px) 100vw, 1024px" />

Clinical documentation is a record of pathology, not a character assessment. Yet, after auditing my own medical records, I found decades of “subjective” notes that had nothing to do with my physiological state and everything to do with a provider’s snap judgement and dismissal of my lived reality.

It doesn’t matter if a provider feels these words “justified” in the moment. Once they are in the patient’s chart, they become a permanent filter for every provider who follows.

The words on the black and white side minimize and dismiss both objective findings and my symptoms.

In the image above, a provider documented that my degree of disability ‘surpassed objective findings.’ In doing so, they failed to recognize my functional reality: I was a Speech-Language Pathologist unable to see my patients for 3 weeks after losing my voice to an ulceration on my vocal fold. When documentation focuses on ‘surpassing findings’ but ignores a total loss of vocational function, the clinical record is incomplete. We must document the patient’s life, not just the provider’s impression.

The Scope-of-Practice Gap:

I found repeated psychiatric judgments—labels like ‘pressured speech’ and ‘somatization’—written by specialists who were not psychiatrists or behavioral neurologists. Labeling a communication style as ‘pressured speech’ without establishing a neuro-informed baseline (AuDHD) isn’t just a misinterpretation—it is a specialist overstepping their scope to pathologize a natural speech rate instead of investigating physical health.

What they called “pressured”:

  • A Neurodivergent Baseline: If anyone had paused to ask, I would have laughed and told them that I had the words “SLOW DOWN!” in bold on every note for every presentation during my post-graduate education.
  • Physiological Distress: Rapid speech and “short rushes” are frequently associated with shortness of breath. Documentation that reaches for a psychiatric label while a patient is in respiratory distress is a failure of clinical reasoning.
  • Fluency Dynamics: As an SLP, I recognize these patterns as potential symptoms of cluttering among other speech and language disorders.

None of these clinical presentations require a mental health diagnosis. When we reach for mental health labels to describe a fast speech rate, we ignore the very real physical or fluency-based realities of the patient standing in front of us.

The “Incidental” Dismissal

I once had a specialist (not a gynecologist or GI) dismiss my appendectomy as “incidental” to my laparoscopy for Stage IV extra-pelvic endometriosis. When a pathology report confirms ‘Appendix – Endometriosis,’ that appendectomy is a diagnostic data point, not an ‘incidental’ event. Labeling it as such signals to every future provider that the patient’s surgical history—and their reported pain—is irrelevant.

The Receipts:

  • The Science: A 169.4-minute gastric half-time (normal is <90) was dismissed by a specialist who was “not convinced.”
  • The Paradox: A 65% O2 saturation reading was recorded alongside a note that I was “well-appearing”. (Note. The 65% O2 reading was likely associated with PVCs based on the other data in the visit.)
  • The Shorthand: A systemic crisis involving a 20-lb weight gain and pitting edema was labeled “long story typical for Stephanie”.

The Challenge:

  • The Mirror Test: If you were the patient, would you want a crisis described as “typical” for you?
  • Stay in Scope: If you aren’t a psychiatrist, why are you reaching for psychiatric labels to describe a patient’s communication? (Also, check with the patient. Had that provider asked me, I would’ve laughed and told her that my rate of speech has always been fast…in fact, I must actively think about it to speak more slowly.)
  • Watch for Bias: Literally watch for it. If you see a dismissive note from a colleague, don’t carry it forward. Check the data, ask the patient, and document the objective truth.

Let’s hold the record to a higher standard. How can we ensure our “Subjective” notes don’t do lasting harm?

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Access and advocacy, chronic illness, clinical documentation bias, empower patients, invisible illness, more than labs, neurodivergence, patient advocacy in healthcare, subjective vs. objective medical notes

Simple Kanban Task Tracker! Free!

Organize your tasks visually with this easy-to-use Kanban board!

This tool helps you manage your workflow by moving tasks through “To Do”, “In Progress”, and “Done” columns. It runs directly in your web browser and saves your data locally, making it a simple, private way to stay organized.

Key Features:

  • Visual Workflow: Classic Kanban layout with “To Do”, “In Progress”, and “Done” columns.
  • Drag & Drop: Easily move tasks between columns using your mouse or touchscreen.
How to move items in your list
  • Custom Categories: Add your own categories (e.g., “Project X”, “Follow Up”, “Home”) to better organize tasks. Predefined categories include “Work”, “Personal”, and “Urgent”.
  • Color Coding: Tasks automatically change color based on their column (“To Do”, “In Progress”, “Done”) for quick visual status checks. Category badges also have distinct colors.
  • Confetti Fun!: Get a burst of confetti whenever you move a task to the “Done” column. 🎉
  • Local Storage: Your tasks and custom categories are saved directly in your browser, so they’ll be there when you reopen the app on the same device and browser.
  • Clear Completed Tasks: Easily clear all tasks from the “Done” column with a dedicated button.

How to Download and Use:

  • Download:
    • Click the download link provided
    • The license terms (GPLv3) are detailed below and available on the blog post/GNU website.
  • Open: Double-click the downloaded .html file. It will open in your default web browser. No internet connection is needed after opening.
  • Add Tasks: Type a task description, select a category from the dropdown, and click “Add Task” or press Enter.
Image of adding a text and selecting a category
  • Add Categories: Type a new category name in the “Add New Category” section and click “Add Category”. It will now appear in the dropdown list for tasks.
  • Move Tasks: Click and drag (or tap and drag) tasks between the columns.
  • Clear Done: Click the “Clear Done” button in the header of the “Done” column to remove all completed tasks.

Important Notes:

  • Local Data Storage: Task and category data is saved only in the browser you are currently using on this specific device. It will not sync automatically across different computers, tablets, phones, or even different web browsers (like Chrome vs. Firefox) on the same device.
  • Updates: For the latest version of this tool, please check the Nixon Speech and Language Blog or our Discord Community. Follow our blog or social media channels (linked below) for update announcements.

License:

This program is free software distributed under the terms of the GNU General Public License Version 3 (GPLv3). Essentially, this license guarantees you the freedom to use, study, share, and improve the software. You can redistribute it and/or modify it under the terms of this license.

Key points to understand:

  • Freedom: You are free to use, modify, and share this software.
  • Attribution: If you share or redistribute this software (modified or not), you must keep the original copyright notice (© 2025 Nixon Speech and Language, LLC) intact.
  • Sharing Changes: If you modify the software and distribute your version, you must also license your modified version under the GPLv3 and make the source code available. You cannot make a modified version proprietary (closed-source).
  • Commercial Use: You can charge a fee for distributing copies or offering support/warranty for the software, provided you follow all GPLv3 terms (like providing the source code and keeping it under the GPL).
  • NO WARRANTY: This software is provided “AS IS” without any warranty. Nixon Speech and Language, LLC is not liable for any issues or damages arising from the use or modification of this software by others, as detailed in the full license text.
  • Brand Protection: The GPL license applies to the code. The Nixon Speech and Language name and logo are trademarks and are not automatically licensed for use by the GPL.

The full terms can be viewed on the GNU GPL website. Please refer to the full text for complete details.

Developed with assistance from Google AI. © 2025 Nixon Speech and Language, LLC


Access and advocacy chronic illness claims processing clinical documentation bias communication log deductible Department of Education doge Dyslexia education errors processing claims gmail google workspace Guava Health Health apps healthcare communication disparities health insurance health insurance appeals health insurance benefits health insurance mistakes Independent Funding innovation Institute of Education Sciences invisible illness Kanban Task Tracker learning disabilities managing your health max out of pocket medical gaslighting examples medical record transparency more than labs National Institutes of Health neurodivergence NIH Organizer patient advocacy in healthcare Perplexity Health AI petition pharmacy benefit managers Planner Research Funding speech-language pathology Spoonie life subjective vs. objective medical notes Systematic Research

Kanban Task Tracker, Organizer, Planner

Progress

What is progress?

Merriam-Webster includes the following in the definitions of progress:

  • “a forward or onward movement (as to an objective or to a goal) : ADVANCE”
  • “a gradual betterment especially: the progressive development of human kind”
  • “to move forward: PROCEED”
  • “to develop a higher, better, or more advanced stage”
Know history – diverse history. Use research to improve education and healthcare so we can move forward not backward.
Image created by Dr. Nixon’s description provided to Adobe AI.

Imagine.

Pause. Imagine that it’s 1990. You are in a wheelchair. You do the same work as your peers, but you get paid less. You can’t go to a movie theater because there aren’t accessible seats.

Do we really want to go back to that?

That was life before the Americans with Disabilities Act of 1990 that includes Section 504. Section 504, the section being the one currently being challenged by attorneys general in 17 different states with Texas v. Becerra.

In an essay written in Time on February 19, 2025, Rebekah Taussig wrote:

“In many ways, Section 504 has operated as an almost invisible protection – easy to take for granted. And in doing so, we’ve been able to continue the fiction that disability is something that happens only to others. The undeniable fact is that every one of us will acquire a disability if we live long enough. Disability is an experience we can move in and out of over the course of our lives, and disabled people are the only minority group anyone can become a part of at any moment. Section 504 is not a law for “those people.” …

As with much of U.S. politics right now, Texas v Becerra feels like a reckless attempt to pull us back to a former time. But there is one crucial difference between 1977 and 2025. More than one generation of disabled children has grown up under the protections Section 504 provides us. And while the politicians are still reciting the same script, our revolutionary predecessors gave us a new story. We are a valuable part of our communities, we belong here, and we’ve been shown how to fight.”

Civil Rights Protections aren’t Red Tape

Why do you think civil rights laws such as ADA, the Civil Rights of 1964, and Individuals with Disability Education Act of 1990 (among others) were passed?

It was because people were (and still are, just check Supreme Court Cases) treated differently based on their race, religion, national origin, (dis)ability, gender (and gender identity), and sexual orientation.

Image created by Nixon Speech and Language, LLC.

Recently, the Trump administration froze the Civil Rights Division of the Department of Justice and changed the board of the EEOC in a manner that has many concerned. These groups are there to protect people’s civil rights against discrimination by employers, schools, businesses, landlords, law enforcement, and more.

If you think that shouldn’t be a concern, just take a look at what Rep. Rich McCormick (R-Ga) said when asked about school lunches after Trump proposed a federal funding freeze that could affect nutrition support for children: “Before I was even 13 years old, I was picking berries in the field, before child labor laws that precluded that. I was a paperboy and when was I was in high school; I worked my entire way through”.

Use of the phrase “back in my day” to dismiss concerns

Just because something was one way in 1954, doesn’t mean it should continue – particularly when it comes to civil rights.

Disclaimer. This post is not medical or legal advice.

The information provided in this blog post is for educational and informational purposes only. It is based on historical research, analysis, and interpretation, which may be subject to varying perspectives and ongoing scholarly debate. While every effort has been made to ensure the accuracy of the information presented, I do not guarantee its completeness or infallibility. Historical accounts can be complex and nuanced, and my interpretations reflect my understanding of the available sources at the time of writing.

This blog post may also contain personal opinions and reflections on the historical events and figures discussed. These opinions are my own and do not necessarily represent the views of others. They are offered as a basis for discussion and further exploration of the topic.

Readers are encouraged to conduct their own research and consult multiple sources to form their own informed opinions. I am open to respectful discussion and feedback on the content of this blog post, and I acknowledge that historical understanding can evolve over time. Any errors or omissions brought to my attention will be considered and, where appropriate, corrected.

By reading this blog post, you acknowledge that you understand and agree to the terms of this disclaimer.




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Barriers for Dyslexics (1993)

In honor of Dyslexia Awareness Month, here is a 1993 article, Dyslexics Overcome Barriers, that I wrote for my high school newspaper.

I interviewed some of the students at school who had dyslexia as well as some of the teachers who were trained in Alphabetic Phonics (an Orton Gillingham based program) and worked with the dyslexic students.

Dyslexics can provide so much insight into their challenges as well as ways to support them, but so often it seems they aren’t asked for their insight. I’ll go over this more in a future blog, but for now, just consider what these students said in 1993.

Article written by Dr. Nixon March 12, 1993 from the West Brook Times high school newspaper entitled "Dyslexics overcome barriers"

Disclaimer. This article is from 1993. The knowledge base about dyslexia has expanded much since that time. This post is only to provide historical insight not diagnose or treat.

Access and advocacy, Dyslexia, Dyslexia Awareness Month, education

Start needed conversations

You know those moments you wonder whether others have dealt with the challenge you (or anyone you care about) are facing? Maybe they have an idea you haven’t thought of? Or maybe you just don’t know what to do next?

We can learn from each other by sharing information, particularly when it comes to disability access and advocacy. To improve outcomes for individuals facing those barriers, we need to bring the stakeholders to the conversation.

Stakeholders include:

  • Individuals facing barriers (e.g., dyslexia, ADHD, autism, neurodiversity, language disorders, speech sound disorders, etc.)
  • Caregivers/family members
  • Providers (speech-language pathologists, occupational therapists, psychologists, neuropsychologists, etc.)
  • Advocates and attorneys
  • Educators

To get these conversations started, I have started a discord. I know some people may be less familiar with discord, so don’t worry, I’ll do my best to guide those who don’t have discord yet.

Some quick notes that will help you get started:

  • Joining as an individual/caregiver? I’d recommend NOT using your real name or picture just to protect your privacy. I have information about this in the channel called “Setting up a Discord Profile”
  • Joining as a professional? (Educator, provider, advocate/attorney) If you are representing your profession, then use your name. (If you have a gaming discord though, you may want to create a discord account specifically for professional purposes.)
  • Here’s a link to Beginner’s Guide to Discord (from Discord.com)

Please join us to start these conversations.

Access and advocacy, ADHD, Autism, Communication, Discord, Dyslexia, education, Speech and language disorders