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.
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
Have you ever found a statement in your records that felt more like a character critique than a clinical note?
What is one “label” a provider gave you that was the complete opposite of your reality?
How did it change the way you presented yourself at your next visit?
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.
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?
In a world of sponsored “health tech” content, here is the truth:
I am a paying subscriber of Perplexity Pro ($20/mo) and a paying subscriber of the Guava Health Family Plan.
While I serve on the Guava Health Patient Advisory Panel, I do so pro bono (unpaid).
This review is not a promotion; it is a clinical audit. I’ve spent my own money on these tools because I am a “spoonie” patient, provider, and researcher searching for a way to make a complex life more manageable. (But for the record, I do accept cookies.)
The Dangerous Illusion of “All Your Data”
The biggest risk of Perplexity Health (Beta) is the illusion of completeness. Its marketing promises a seamless “Health Hub,” but my testing revealed a dangerous “blind spot.” Despite being connected to my EMRs, Perplexity ignored my most recent labs and defaulted to a T4 Free result from 2021 as my “current” status.
The Safety Warning: If a patient trusts Perplexity’s dashboard, they might miss key data and believe they are clinically stable when the AI is simply “ignoring” the last five years of their data because it didn’t index in a way the AI could add to your biomarkers.
The Guava Advantage: Guava understands that medical data is messy. Even when a provider doesn’t have a direct API integration, Guava allows you to upload the report. The platform doesn’t just “store” the PDF; it indexes and pulls that data into your biomarkers, ensuring your trends are accurate and complete (or as complete as the data it obtains via APIs and your uploads).
Data Latency Proof. Perplexity remained stuck in 2021 despite current data being physically present in the system.
The “Spoonie Tax”: Friction as a Barrier
Chronic illness management is often a full-time job. We use technology to save “spoons,” not spend them. Perplexity, however, added to that fatigue through technical friction:
The Quantity and Size File Wall
I could only upload 200 documents. As a person with chronic illness who has been on this earth more than say 40 years, that didn’t begin to cover even half of my documents. You might tell me, ‘Just upload the most important ones’ or ‘Import them from the provider’, well, I tried that.
The connection to my primary care provider’s office linked to her old facility vs. the current one despite having the correct address on file for her.
My dermatologist, hematologist, integrative medicine provider, endocrinologist, cardiologist, gynecologist, primary care provider, and gastroenterologist weren’t accessible via Perplexity. (And these are only a few of the providers whose data couldn’t be accessed by Perplexity.)
Note. Six of eight of the above aren’t accessible via Guava either, but I can upload those visit notes to Guava Health myself.
To only see 10% of the data can also limit seeing the big picture. So, I grouped the files using Adobe to upload them (after deleting each individual file that I had uploaded).
BUT if you’ve used AI to try to analyze data in large 150+ page files, you’ll know … it isn’t always easy. (Even Gemini tells me occasionally that my files are “too large”.)
The Administrative Demand
Then I had an interesting ‘conversation’ with Perplexity’s AI when I realized that despite syncing up with the API of one of my facilities with most of the lab data, it was missing specific data points (e.g., all Free T4 data after November 2021 despite that specific lab being drawn between 2-6 times/year.)
So I asked Perplexity Health’s AI where the labs are, and was told “You’re right that [FACILITY X] has them and that you uploaded them; the issue is that they’re not surfacing in the structured “labs/observations” stream I can see”. The AI provided several reasons for why those labs weren’t there:
They may be stored only as a scanned PDF/image of the ER report, not as discrete lab rows, so they don’t appear in the lab feed even though they’re in your chart.
The upload might be filed under “Media,” “Documents,” or an outside-records bucket that isn’t mapped into the lab/observation section my view is pulling from.
The interface that shares data from Facility X’s EMR to this aggregate view may not map ED lab panels from that date or that specific visit type correctly.
But as a patient, provider, or researcher, the issue for those of us using Perplexity Health is that those labs aren’t there, and even uploading them, doesn’t lead to them being added to the biomarker section of the site.
So when I asked Perplexity AI what I should do, it suggested that I call the hospital’s IT department to request they “re-index” my FHIR API mapping.
Fig. 2 Perplexity delegates technical labor to the patient; Guava automates the extraction through AI parsing.
Even when I provided the connections to the facilities and uploaded the records (labs and visit notes), which took A LOT OF TIME, I learned today from the Perplexity Health AI: “So even though those note sets exist in your health system, what’s flowing into this connection right now is the coded summary, not the full written note body”.
To get Perplexity Health AI to review the visit note (not the summary, the actual note), I had to reupload the visit notes to the AI side of the conversation so it could read those vs. the coded summaries.
With that in mind, Guava’s AI had me copy the line from the visit note that I wanted it to compare with my other visit notes. This is what Guava Health’s AI told me today: “I can review excerpts you paste here, but I can’t directly pull provider notes from your chart unless the app exposes them to me in this chat. If you want, paste the relevant sections”.
The Patient’s Reality
Asking a hospital’s HIM department to fix a third-party AI’s mapping is an exercise in futility. We don’t have the energy to act as unpaid data engineers for a Beta product that is already charging a premium. Also, what do you think the hospital system would say if I asked for this?
Help Desk Emails
I have emailed the help desk for Perplexity Health AI and Guava. Because I did so about the above issue with Perplexity Health AI at the suggestion of the AI after it realized it was missing significant biomarker data points, let’s address the difference.
Perplexity Health: AI Support Agent Sam emailed me back to thank me for my insights and saying that they forwarded my feedback about lab integration limitations, file upload limits, and suggestions to the product team. I sent the email April 14, 2026. I haven’t heard back.
Guava Health: This is one example of an email with the Guava Help Desk. I emailed Guava Health’s Help Desk and asked how to fix an issue when there were two sources for the same lab on August 7, 2025. On August 8, 2025, I received an email from Alex Yau, Founder and President of Guava Health to answer my question. He asked for a screenshot for an example, which I sent and he followed up with additional insight and added that he would forward it to his team to give more thought.
Note. Both Perplexity Health AI and Guava Health have discords. I am not in the Perplexity discord, but I am in the Guava Health Discord.
The Android OS Barrier
While iOS users have a native Hub, Perplexity is “desktop-primary” for Android users. Using a mobile browser to check your health data is clunky and lacks the seamless utility of a native app.
The Repository Advantage: DICOM, Quest, and GI Notes
Guava is a Source of Truth; Perplexity is a search window.
Imaging (DICOM): Guava supports actual X-ray, CT, and MRI image files. You aren’t just storing a “report”; you are carrying your entire imaging library in your pocket. (Note. You need to upload those, but, still.)
Medication Reconciliation: I manage 62 active medications. Guava allows me to merge and deduplicate them across providers. Perplexity was able to retrieve some medication lists from the facilities BUT some of those lists were outdated.
My understanding is that Perplexity Health AI integrates with Apple Health for medication management, but I use Android, so I cannot comment on that.
I can, however, comment on Guava Health’s Medication management:
Data Portability: The “Disability & Tax” Hack
The true power of a health platform is what you can do with the data.
The Guava Hack: I downloaded my encounter history from Guava and used Gemini (in thinking or data analysis mode) to generate a mileage CSV for my taxes and a total encounter count for other paperwork. Guava provided the “raw material” to simplify my legal and financial life.
Perplexity’s Failure: Because Perplexity couldn’t accurately aggregate my history, I question whether it could do so accurately.
I’ll talk more about this in another post.
Setting Health Goals in Perplexity
One of the most revealing disconnects in Perplexity’s “Health Hub” is the Health Goals feature, which feels fundamentally “un-Spoonie.” While the marketing suggests a personalized experience, the available goals are largely aspirational wellness targets—like “Improving sleep” or “Marathon training”—that assume a linear, healthy baseline.
For a patient managing chronic illness, these rigid targets are often inappropriate or even demoralizing, as they ignore the daily fluctuations in energy and capacity that define the “Spoonie” experience. In contrast, the Fitbit Beta with Gemini feels significantly more approachable; instead of assigning a generic wellness category, it begins with a conversation about your specific challenges and health conditions. This “Coach” approach allows the AI to adjust its insights to your actual reality, rather than forcing you into a “fitness enthusiast” mold that your body simply isn’t in today.
Taken from Perplexity Health AI. It felt like there should be an “other” option.
Auditing for Bias & The Privacy Trap
I decided to test Guava Health and Perplexity AI today on auditing visit notes for biased language from a specific former provider.
While Perplexity was helpful, I found that NotebookLM and Gemini were significantly better at finding subtle linguistic cues.
Guava Health had me copy and paste the lines from the visit note into the AI for analysis against my record, but the AI then gave me an excellent plain language overview of bias in the portion I provided it.
CRITICAL PRIVACY WARNING: Unless you have a signed BAA (Business Associate Agreement)—like Guava—BE AWARE that uploading sensitive records to any non-HIPAA compliant AI (e.g., Gemini via personal Gmail, NotebookLM attached to personal Gmail, ChatGPT, or Perplexity without the Perplexity Health piece) is only as secure as your cloud data/passwords/and more.
Final Verdict: Research vs. Management
Perplexity Health is charging a premium ($20/month) for a Beta product that requires the patient to act as a manual data entry clerk. It is for people who want to research a disease.
Guava Health is for people who have to manage one. Guava Health Premium is only $8 per month. And if your provider has a Guava Health Provider Dashboard and invites you to it, IT IS free for you. Guava Health also offers a free version to patients.
Use Perplexity if: You want a search engine for medical trends. (Maybe? But I still haven’t tested this out as much as I need to. I tend to use Google Scholar.)
Use Guava if: You need to manage medications, prepare questions for medical visits, quickly access provider notes, see overviews of your biomarkers, store your imaging, and have your data work for you in the real world.
COMING SOON:
How to get a copy of your evidence (certificate) of coverage
The Disability & Tax Guide: A step-by-step on using your medical data to navigate these two data heavy tasks.
The Provider Portal: How Guava helps your doctors help you.
Guava Tags: How I use custom tagging to find patterns in flares.
If you have questions about Guava Health, post them here!
Identification Note:Logos used for nominative fair use for critical review. Stephanie Nixon, PhD, CCC-SLP serves on the Guava Patient Advisory Panel pro bono. Review based on the April 2026 Beta of Perplexity Health.
🚨 TL;DR: The “Paddle Boarder’s Guide to Surviving the Medical System”
The Problem: For neurodivergent and chronically ill people, a change in medical plans (like a surgery delay) isn’t just an “inconvenience.” It is an enormous, destabilizing wave that threatens to knock us completely into the water.
The Metaphor: Most people navigate medical uncertainty on a stable cruise ship. They feel the waves but stay dry. We are on a stand-up paddle board. We require constant, exhaustive internal effort to balance on perfectly calm water. When the system changes, a “ripple” to the cruise ship becomes a catastrophic “tsunami” for us.
The Fatigue: We are exhausted not because we are “weak,” but because we are spending all our energy on a silent, Invisible Brace. Every admin call, sensory input, and physical pain is a wave hitting our wobbly board.
The “Flip”: When we have a meltdown, shutdown, or cancel plans, the “board has flipped.” This isn’t a failure; it’s a necessary, protective reset. We need to “sink” for a minute to stop the adrenaline of trying not to fall.
How to Help: Don’t tell us to “be flexible.” Help us stabilize. Be the solid object we can hold onto. Take over the phone calls and give us the grace to be “underwater” until the sea calms down.
How many of us have heard these words, “Be more flexible”? I didn’t realize that meant my surgery date would be doing yoga while I’m just trying to stay upright. Between the rogue waves of kidney stones and the sinking weight of low ferritin, my medical calendar has become a series of “maybe next weeks” for my lumbar fusion.
To most people, a schedule shift is an inconvenience—a slight tilt on the deck of a cruise ship. But for the neurodivergent and chronically ill, stability isn’t a given; it’s a manually operated system. We aren’t on the cruise ship. We are on a stand-up paddle board in the middle of a high-traffic wake. Each appointment that changes often means changing another appointment, changing a leave request, and navigating yet another unknown.
When the world tells us to “go with the flow,” they don’t see the Invisible Brace. They don’t see the constant, microscopic mental and physical adjustments we make just to keep our heads above the spray. In a medical system that moves like a speedboat, being “flexible” isn’t a personality trait—it’s an expensive, exhausting executive function tax that may eventually lead to our board flipping.
And sometimes, flipping the board is the only way to finally find some peace.
The First Wave
It started with a constant wave pushing my side. A kidney stone—the first rogue wave in a storm I didn’t see coming. Then came the low ferritin, the overwhelming fatigue, and the sudden, sickening realization that my carefully constructed medical plan was no longer a plan; it was a loose suggestion.
In the midst of this chaos, I kept receiving I felt like I just needed to be remain flexible.
But that is a lot to manage: Flexibility is a great trait for a gymnast, but it’s a terrifying requirement for a medical plan. Here is the reality of my recent experience:
The Paddle Board vs. The Cruise Ship
To understand why “going with the flow” is so utterly exhausting for neurodivergent and chronically ill people, you have to understand the difference in our vessels.
Most people experience medical delays or schedule shifts like they are on a massive cruise ship. The floor might tilt, the waves might get choppy, and it’s certainly annoying, but the hull is thick enough to absorb the impact. They stay dry. They stay standing.
But when you are neurodivergent—craving predictability to manage sensory and cognitive loads—or living with chronic illness, you aren’t on a cruise ship. You are on a stand-up paddle board.
Even when the water is perfectly flat, we are already expending significant executive function and physical energy just to maintain balance. Every sensory input, every social interaction, and every administrative task requires a micro-adjustment of our internal stabilization systems.
When the medical boat (the scheduling office, the specialist, the test results) suddenly changes course, it creates a massive wake. For the cruise ship, it’s just more water. For the paddle boarder, it is a catastrophic side-chop that we were not braced for. Telling ourselves to “just stand up” when we have been knocked horizontal by the wake is a misunderstanding of physics.
The Invisible Brace: Taking on Water
If it’s not the main wake from the medical boat, it’s the debris. Being neurodivergent in a medical shift (or even change in what to do next) feels like you are paddling through a constant, exhausting stream of waves you cannot anticipate.
While we are trying to keep our balance, the environment is constantly throwing more waves at us, demanding more “flexibility”:
The Rogue Wave (The Admin Avalanche): Having to make immediate phone calls to rearrange transportation, update employers, or coordinate with multiple specialists, all while processing bad news.
The Side-Chop (Sensory & Cognitive Overload): Navigating an insurance company’s phone menu or reading complex medical instructions while in physical pain and brain fog.
The Undertow (Sensory Dread): Mentally bracing for the specific sensory inputs of an impending procedure, only to have that dread extended indefinitely when the date moves.
This is Tether Fatigue. We are exhausted not because we are “difficult,” but because we have been in a permanent, tense, Invisible Brace for weeks, absorbing the kinetic energy of every ripple. Our energy reserves are fully bankrupted by the sheer volume of waves we’ve had to process just to avoid falling in.
The Grace of the Capsized Board
There comes a point where the balance is lost. The board flips. The paddle boarder goes under. To an observer, this looks like a crisis, a meltdown, or “giving up.”
But here is the secret that the neurotypical world needs to understand: Sometimes, we need to let the board flip.
When we hit the water, the Invisible Brace is finally over. We stop fighting the waves. We stop trying to anticipate the next administrative side-chop. For a moment, there is just the quiet, cold weight of the water.
We aren’t failing to cope; we are allowing the system to reboot because the cost of staying upright on a wobbly board hit by a tsunami has fully bankrupted our energy reserves. We need that “sink time” to stop the adrenaline and let our nervous systems reset before we can even think about climbing back onto the board.
How to Be an Anchor
If someone you love is neurodivergent or chronically ill and their “ship” has just flipped, don’t stand on the shore and yell at them to swim harder. Help them stabilize the water.
Reduce the “Administrative Friction”: When the plan changes, the “to-do” list explodes, requiring executive function we don’t have.
Don’t say: “Let me know if you need anything.”
Do say: “I am standing by a phone. Give me your permission, and I will handle the rescheduling calls today so you don’t have to explain your situation five more times.”
Validate the Physics, Not the Feeling: Don’t gaslight us with positivity. Acknowledge the environment.
Don’t say: “Just keep rowing! Be resilient!”
Do say: “The water is incredibly choppy right now. It makes total sense that you fell. I’m right here when you’re ready to try again.”
Grant the Grace to Sink: Let us stay underwater for a minute. We need that silence to recalibrate before we have the strength to climb back onto the wobbly board.
Examples of Stabilization in Action
Example A: Dear Medical Provider (The View from the Paddle Board)
“When you tell me a surgery is delayed or a result requires a pivot, you might see it as a minor scheduling shift. For my neurodivergent brain and my chronically ill body, it is a tsunami hitting a stationary paddle board. Please help me stay above water:
Reduce the Administrative Friction: Don’t make me the middleman between specialists. Coordinate the update with my other providers so I don’t have to spend my limited energy repeating my trauma five times.
Give Me a Fixed Point: Tell me exactly what the next step is. Ambiguity is a wave I cannot balance on.
Example B: Dear Friend (When My Board Flips)
“Right now, the floor is shaking. I am exhausted from trying to ‘stay upright’ on a board that feels every single ripple. When you see me overwhelmed, please know that I’m not being difficult—I’m bankrupt from navigating a constant stream of administrative and sensory cross-currents. Here is how to be my anchor:
Don’t Ask, Just Do: Telling me ‘I’m bringing over safe food at 6:00 PM’ is infinitely more helpful than ‘Let me know what you need.’
Let Me Sink: If I cancel, don’t take it personally. My board has flipped, and I promise I’ll climb back on when the sea calms down.”
Flexibility isn’t a personality trait; it’s an expensive resource. For the neurodivergent and chronically ill, “going with the flow” often means fighting the current just to avoid drowning. Sometimes, the best way to help us is to just let us float until the sea is still again.
Note about the art:
To capture the “layered” nature of neurodivergent life, I used a collaborative AI process to create the visuals for this post. I worked with Adobe Firefly to generate the base “paper-cut” style and used Gemini as an “Art Director” to refine the metaphors—ensuring the “administrative debris” and the “underwater reset” felt as visceral as the words themselves.
With a unique perspective shaped by my own learning disabilities, including ADHD, I bring a wealth of professional expertise in education and health policy, grant review, as well as research, evaluation, and treatment of children with speech, language, and reading disorders.
My passion lies in advocating for those who are not able to do so for themselves, leveraging my diverse background – both personally and professionally – to make a meaningful impact in the field of special education and child development.
Stop scribbling on scrap paper. Here is the exact system I use to hold insurance companies accountable (and keep track of what has been said).
In my last post, I talked about the importance of documenting every single interaction with your insurance company. But let’s be honest: when you are managing a chronic illness, working, or just living life, finding a notebook and a working pen while on hold is just one more hurdle.
My husband and I realized early on that we needed a system that was fast, shared, and impossible to lose.
Our solution? A simple Google Form.
It lives as an icon on our phone home screens. When we get on a call, we tap it, fill in the blanks while we talk, and hit submit. It automatically saves everything into a spreadsheet that we can search later.
Why This Works Better Than a Notebook
It Prompts You: You never forget to ask “Who am I speaking with?” because the form requires you to type it in.
It’s Collaborative: If my husband takes a call, I can see the notes instantly on my computer. No more “Did you call them?” arguments.
It Creates a Timeline: When you need to file a grievance (like I did), you just open the spreadsheet and copy-paste the entire history.
The Fields You Need (Steal My Form)
I created a free Google Form with these specific questions. You can copy this exact structure:
Patient calling about: (Checkbox: … Names of those in the household, etc.)
Date called: (Date picker)
Who contacted? (Checkboxes: Benefits, Care Management, CVS Caremark, HR, etc.)
Method of contact: (Checkboxes: Phone, Email, Secure Message)
Did I record the call? (Yes/No – Check your local lawsas many areas require you to ask permission to record.)
My Script: “I need to record this call so I have a record of what to do next. Do I have your permission to record?” Note. Be sure to note this to any new call participants.
Note: If they say “No,” I immediately ask: “Since you are recording this for quality assurance, can I request a copy of that recording for my records?” (This usually changes the tone of the conversation!)
Name of representative: (Crucial! Always ask for this first)
Reason for call: (e.g., Prior Authorization, Billing Error, Benefits Question)
Summary of call: (What did they say? What did you say?)
How long were you on the call? (This is important evidence for complaints)
Action items: (What did the representative promise to do? What do you need to do?)
Follow-up date: (When should you check back?)
Header for your form.Settings for the form. Some are personal, but this let’s me and Josh know who entered the data.I have the email addresses required by default and the same for questions. (You can set some as not required.)
How to Set It Up
Go to forms.google.com and click “Blank Form.”
Add the questions listed above.
Click “Send,” copy the link, and email it to yourself and your spouse/caregiver.
Pro Tip: Open the link on your phone, tap “Share” (iOS) or the menu dots (Android), and select “Add to Home Screen.” Now it looks and acts just like an app.
The Result
When my pharmacy billing nightmare happened, I didn’t have to rely on my foggy memory. I opened my spreadsheet and saw exactly who disconnected on me on January 29th, and exactly what “Curtis” told me on February 6th.
That data wasn’t just notes; it was evidence. And evidence is the only thing that wins insurance appeals.
Disclaimer: I am a Speech-Language Pathologist and person with chronic illness, not an insurance broker or attorney. This post shares my personal experience and is not intended as legal or financial advice.
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