Reducing Barriers: How ChatGPT Expanded My Ability to Participate in my Own Health Research

by Mary Doge

Introduction

I started using ChatGPT after seeing how it could help with academic tasks like generating bibliographical entries and finding relevant quotes.  ChatGPT also did summaries that were useful as abstracts for academic papers.  However, research papers weren’t my personal focus in using ChatGPT.  During my first year of using ChatGPT, I focused on finding Internet content that belonged to me or that mentioned me.  ChatGPT then used this content to build a footprint summary about me that I found very fun and insightful.  However, there were times when I was frustrated with ChatGPT because it assumed I was not knowledgeable about topics and would list a huge amount of details that I already knew.   ChatGPT performed better when I told it my level of knowledge about a topic.  ChatGPT surprised me a great deal when it did a summary of the previous year’s worth of my use of it as a means of celebrating the upcoming New Year.  I didn’t expect that at all, and it was fun to read.  ChatGPT matters for disability and accessibility as I will explain to you below.

My Experience with Health and AI

1. AI is an accessibility amplifier, not just a convenience

It is a tool that reduces friction:  

• Acting as a “thinking partner” when energy or focus is limited and exposing inconsistencies or gaps in your knowledge:    In the past, I struggled to research my symptoms by collecting medical files and searching the Internet for clues.   Furthermore, I have tried for more than a decade to figure out if I had a new version of Glycogen Storage Disease (GSD) similar to McArdle’s Disease or not.  After learning that AI tools could be used to help analyze complex health information, I uploaded these medical files from 1994–2024 one by one to ChatGPT.  Prior to doing this, I acknowledged the tradeoff between the privacy concern I had about people reviewing my chats as part of their jobs and the benefits that ChatGPT may give me.  It was a deliberate decision, not an impulsive one.  Quickly, ChatGPT helped me to realize that it could not be a GSD, because I had symptoms at rest.  Also, it pointed out that my aldolase, a muscle enzyme, was not normal.  I inferred from ChatGPT that aldolase is worth monitoring.  I had not known that there was another muscle enzyme like creatine kinase (CK).  
  
  
• Turning complex information into plain laymen’s language:  My files were ones that I had shared with a Glycogen Storage Disease researcher and a director of a Glycogen Storage Disease clinic in Houston, TX.  After reviewing my files, they both recommended a Whole Exome Sequencing (WES) test to find out what is wrong with my body.  I ended up getting a Whole Genome Sequencing (WGS) test at the recommendation of a geneticist at Johns Hopkins Genetics.  Then I used ChatGPT to understand the Whole Genome Sequencing genetics report about my TTN gene deletion.  ChatGPT told me that the last third of the TTN gene is missing in my body.  This was something I would not have understood from reading the complex report.  Later, ChatGPT helped me to think, but not conclude definitively, that due to my TTN gene deletion, the energy I have available to spend is only 25% to 40% of the energy that normal people have at their beck and call.  It is not a diagnosis, but my interpretation, which is better than what I had thought before.
  
  
• Helping organize scattered thoughts into structured output:  ChatGPT told me that I was constructing a body model with the medical questions I had been asking it.  I was not aware previously that this was something I was doing until it told me.  It helped to clarify what I already thought.  I started using the phrase “body model” after that.  I told ChatGPT to update the body model with new information I was feeding it.  ChatGPT helped me to expand concepts for the body model as well.  Developing and refining my body model is an example of how ChatGPT helped me identify patterns in complex information.  AI reflected patterns back to me.  Through our discussions, ChatGPT observed that I tend to think about systems and long-term patterns.  This was a valuable insight about me.  As a result of my interactions with ChatGPT, I inferred from the body model that my recovery from surgery would take about twice as long.  I had second thoughts about undergoing surgery.

This is the core: AI can function like a cognitive accessibility aid—not replacing ability, but extending it.  That’s not just assistance—that’s metacognition support.

2. AI is the “always-available collaborator.”

Unlike human helpers:

• No scheduling and no fatigue - However, there are limitations as discussed below.
• No judgment - You can tell ChatGPT to talk differently or you can pick a different personality.

That matters more than people admit. Especially if someone has fluctuating energy, executive function challenges, or limited support access.  

Where AI Falls Short

There are limitations to the free ChatGPT service.  These limits are:

• Practical platform limits (models, delays): There are built-in delays for using the first model of ChatGPT, but I have understood that the secondary models of ChatGPT are not significantly different with respect to their reasoning power. There are built-in delays for creating images and uploading files.
• Cognitive boundaries and conceptual limits (i.e. not a doctor): ChatGPT is not a doctor, therapist, or authority. It does not replace human expertise. Furthermore, AI can misunderstand context or forget something. ChatGPT can forget details unless you tell it to store them in available memory slots, which need occasional cleanup when they get full.
• Ethical and philosophical points (i.e. not human): Outputs from AIs still need human judgment. ChatGPT is useful without pretending it’s human. Don’t lean into “AI is my friend.” ChatGPT can feel supportive, but it works because of design, not emotion. The value comes from interaction, not consciousness. You do not want to rely on AI to the exclusion of everyone else who could help you, including doctors and specialists. It is also important to maintain human connections for your emotional health.

Why This Matters for Accessibility

AI is a tool that can reduce barriers to participation and help level the playing field. For people with disabilities, it creates new opportunities to research, write, organize ideas, and contribute more independently. ChatGPT is not perfect, and how you use it matters.

This article itself was created with ChatGPT’s help, but more importantly, it reflects something larger:  a shift toward greater independence and participation. In my case, it changed how I approach my own health by helping me understand complex information and ask better questions—especially in situations where access to specialists is limited.

In practice, AI has helped me take a more active role in managing my life and health. It doesn’t replace professionals or human connection, but it makes both easier to access. That’s where it proves most valuable.