Chapter 13: I Read It Online. ππ©π¦ ππ°π°π₯, ππ©π¦ ππ’π₯, π’π―π₯ ππ©π¦ ππ¨ππΊ ππ§ ππ―ππͺπ―π¦ ππ¦π₯πͺπ€π’π ππ―π§π°
For many Americans, as trust in doctors and traditional medicine has weakened, the use of online support tools has grown. After all, if you donβt trust your doctor, who can you look to for advice? Other patients or new technology? Online medical resources can be tricky. What are their strengths and weaknesses?
There are three loose groupings of resources. Hereβs what you need to know about each before you use them.
1. Crowd-Sourcing Medical Advice
2. Symptom Checkers
3. Artificial Intelligence
Pro-Tip:
No matter which source you use, double-check everything you learn online. Yes, even my words. Like most journalists, I never depend on one source. So, I research my prescriptions and supplements before I pay for them, any procedures or invasive tests before I schedule them, and all medical advice before I report it here.
Crowd-Sourcing Medical Advice
Thousands of people crowdsource their medical advice the same way we once swapped recipes via online patient communities on social media sites like Facebook, Reddit and more. Many well-established nonprofit groups who advocate for patients with specific diseases also offer resources and use social media to amplify their messages. Theyβre organized by medical condition or experiences.
For example, there are dedicated websites for every disease from A (Addisonβs Disease) to Z (Zika Virus). There are also groups for patients who still have no diagnosis at all, often despite disabling symptoms, even after years of searching.
An organized community can be public or private, so check before you post. Most often, these groups offer a two-way dialogue where you can share your experiences, ask questions, or just vent to release tension. Members reply to offer broad advice, individual support, or specific resources. You can find them by searching your social media of choice for your specific diagnosis or broad category of illness or try key words like misdiagnosed, undiagnosed, medical harm, etc.
What social media does well is empower patients. It provides access
to tactical and emotional support, resources and encouragement.
For example, endometriosis Facebook groups are very active. If you search for the hashtag #endometriosis on Facebook today, youβll get 1.3 million posts. Why? Because endometriosis is a common disease and yet itβs highly misdiagnosed. On average, it takes ten years to get diagnosed even though it affects at least one in ten women of reproductive age β thatβs almost 7 million American women.
On social media sites that donβt offer groups, like Threads, X, BlueSky, and Instagram, you can also post medical questions to the public, using a hashtag, and anyone can answer. The hashtag creates a temporary group.
Most posted questions are answered by other patients. When medical professionals and other health care journalists participate (including me), they donβt suggest diagnoses or specific treatments. They try to offer support, resources, process suggestions, or correct inaccurate medical terminology.
The Good. What social media does well is empower patients. It provides access to tactical and emotional support, resources and encouragement. When Dave deBronkart, known publicly as E-Patient Dave, learned he had a terminal kidney cancer with six months to live, he turned to an online group of kidney cancer patients where he discovered the medical treatment that saved his life. That was in 2011. Today, he runs the group ββ and the hashtag ββ #PatientsUseAI. [See below]
It can be feel very isolating to get a serious diagnosis, or to feel ill without answers or solutions. Doctors are supposed to take the time to answer your questions when they communicate your diagnosis and make themselves available after. Theyβre supposed to carefully explain all of your treatment options and make recommendations. Theyβre also supposed to discuss your preferences and choices. Some do this well, and still their patients feel alone.
Itβs worse for the millions of patients who have not yet been diagnosed. Knowing thereβs a community of people who are in the same virtual boat can be very comforting. The support and sense of community are real. Members care and want to be helpful. Often, they rush to support those who express despair, surrender, even suicidal ideation. Some are there just because they were helped and want to pay it forward.
The Bad or The Ugly. Caveat emptor. Approach with caution if youβre seeking specific medical advice because it can be life-saving or life-threatening. The membersβ expertise are based on their own individual disease journeys or their experience as caregivers. What theyβve experienced may not apply to your situation.
Be wary of AIβs answers. Would you trust it with your one precious life?
Specific disease groups focus on treatment as much as on diagnosis. New members ask for medical, surgical and medication advice, or upload their test results and ask if anyone can explain it. The answers are wrong as often as theyβre accurate and, frequently, they contradict one another. Thatβs why some groups ban it or the names of specific medications. Others just ban aggressively negative comments and spam-worthy sales pitches.
If you check out the Facebook groups supporting patients who have not yet been diagnosed, youβll find thousands of people in private group conversations sharing intimate medical details with one another. Most have one thing in common; theyβre desperate for answers, hoping to figure out what their doctors are missing. Many have been seeking answers for years as their bodies break down, their symptoms worsen or new bizarre ones appear. They share images of their test results and long posts listing their symptoms. They post photos of skin disorders or twisted limbs.
Answers can include links to alternative medicine products, some of which are harmless but not all. Much of the action is private; many comments say DM (direct message) or PM (private message), where names of functional, complementary, alternative medical providers and naturopaths are quietly gifted. Approaches like energy therapies, herbs, drug cocktails, and chelation (removing metals like lead from the body) are swapped like trading cards.
My Recommendation: The social media groups are best for emotional support, seeking advice about medication side effects, choosing between two treatment options, and sharing your concerns. If you have a diagnosis, I recommend visiting the disease-specific nonprofit advocacy group websites first for the most up-to-date information. If youβre still seeking a diagnosis, read my Symptom Checker and AI recommendations below.
Symptom Checkers
For over 10 years, online symptom checkers have helped multitudes of patients. Originally designed just for clinicians who paid large fees for the professional versions, free versions are now available online and in app form for everyone. What they offer is a way to help narrow the list of medical issues. Plus, they can improve the way you present your symptoms to your doctor.
Basically, they all work similarly. Enter your symptoms, as many as you have, in any order. Answer some pertinent questions about gender, age, location. Most symptom checkers will then create a list of possible diagnoses. Any life-threatening choices will be red flagged, letting you know theyβre important to rule out quickly. Common diseases will be marked as well as rare diseases. Most offer links to external information so you can read more about the disease, its symptoms, testing options, and how to treat it. Others have their own resident information.
The Good. They work well, quickly, are easy-to-use and theyβre free. There used to be just a handful but now many healthcare institutions offer their own versions. Most allow you to print out the results.
Hereβs a list and links to several symptom checkers. I tested more than are listed here.
The Bad or The Ugly. Most importantly, despite entering the same symptoms and answers, they all gave me different results. Three suggested bacterial pneumonia, three suggested POTS and two named Lyme Disease. No symptom checker is designed to let you self-diagnose and self-treat. To get answers and cures, you still have to see a doctor or nurse.
Symptom checkers can produce a list thatβs too long in an effort to avoid missing a red flag disease. They donβt explain the scale of symptoms well, so you may think you have some dread disease. Medical conditions may be described based on typical presentations, meaning the way white men may experience the symptoms and not how women, children, seniors, other races and nationalities may experience them. That is a major contributor to misdiagnosis in human doctors and can be reinforced by symptom checkers. And they may link to information that is either overly complex using medical jargon to define other medical jargon or using overly simplistic language that misses the range of complexity.
My Recommendation: Symptoms checkers are most helpful for narrowing down the over 23 thousand known medical conditions to a manageable number. Use them to get a diagnosis from the beginning or to seek one if your doctor is stymied or ignoring some of your symptoms. Theyβre a great way to start a conversation with your doctor or to identify which specialist to visit.
Artificial Intelligence (AI)
Everywhere you turn today, in healthcare and every other industry, headlines talk about the power, the promise and the frustrations of using AI.
Artificial Intelligence applies to machines and computers that do the work humans normally do, faster than humans can do it, like reading and summarizing vast quantities of data or complex math equations. But it also applies to tools that enhance human decision-making, reinforcing and expanding our thinking. Medical systems have used AI for years with clinical decision support tools, AI robotic surgery, and the field of precision medicine with tests and medicines designed to work with your DNA. Healthcare professionals also have a growing list of AI clinical support tools. I use one regularly for research.
For patients, there are many AIs that can now help you navigate your medical info needs, including ChatGPT, Gemini, Perplexity and Claude. Think of them as a tool, like the symptom checkers, rather than a magical answer box. According to Patients Use AI, donβt use AI for answers. Use it to help you think and reason.
The Good. A 2023 paper in JAMA Internal Medicine noted that ChatGPTβs responses to patient inquiries were better quality and more empathetic than human physiciansβ responses, over three-quarters of the time. The AI was able to give more thorough answers, with greater detail, in easy-to-read formats, and could empathize with the patientβs situation, all in seconds. Of course, AI is NOT empathetic but it fakes it well. The human doctorsβ responses were limited by their physical reality and time.
Try it with your AI of choice. Chat with it about your concerns as you wish you could with your doctor. Get more information on an upcoming test. The AI has all the time in the world for you. With every answer, ask it for its thought process. Why does it suggest one thing over another?
The Bad or The Ugly. Be wary of the answers, though. Doublecheck every one. Why? Because AI is wrong, a lot, from 10% to 60% of the time. According to the University of Maryland, it can give the wrong answer, omit information by mistake, make up completely fake people, events, and articles, and mix truth and fiction. I have found significant errors in every exchange I have had with five different AI chatbots. I wouldnβt trust it ββ yet ββ to choose a restaurant for me; it made up four of the five it recommended. Would you trust it with your one precious life?
My Recommendation: AI is best as a tool to help you think, explore, research and to get clear explanations. Use any of the AIs to learn more about your new diagnosis, or to interpret your test results (after removing your name and birthdate please). If youβre undiagnosed after seeing your doctor, list your symptoms and ask for help figuring out which specialist to see. There will be improvements in the coming year with AIs designed especially to give you a diagnosis but theyβre not there yet.
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All online resources have pros and cons. Think of them as study aids to prepare you for your next doctorβs visit. Trust and verify every piece of advice.
Next up: Chapter 14 - How To Decide If Surgery Is Your Best Option.
Β© Helene M. Epstein 2025
Thanks for this, Helene. Just because of my age (58) I don't think I'll ever be comfortable with AI, but I appreciate that it can serve as a thinking tool.
A great and helpful overview, Helene. I agree that these tools are a great starting point that can lead to more effective conversations with your health care provider.