If you have ever left an appointment thinking, “That does not sound like what I am going through,” you are not alone. Diagnostic errors are common and can cause serious harm. Large national studies estimate that hundreds of thousands of people in the United States experience death or permanent disability each year because of diagnostic errors. Evidence from the National Academies suggests that most people will experience at least one diagnostic error in their lifetime.
This guide is designed to help you:
Understand what misdiagnosis is and why it happens
Recognize warning signs that your diagnosis may not be right
Speak up, get second opinions, and use your rights as a patient
Work with advocates, including Understood Care, to feel heard and supported
Throughout, you will see some of the same key points that Debbie, a Care Advocate at Understood Care, shares with patients in her video about misdiagnosis and speaking up.
What Is Misdiagnosis?
Misdiagnosis is a type of diagnostic error. It can include:
Receiving the wrong diagnosis
Having a serious condition completely missed
Having a diagnosis made too late to prevent harm
The Agency for Healthcare Research and Quality (AHRQ) describes diagnostic errors as failures to explain a patient’s health problem correctly or in a timely way, or failures to communicate that explanation to the patient.
How common are diagnostic errors?
Recent research funded by AHRQ and published in a major medical quality journal estimated that, in the United States each year, diagnostic errors are associated with an estimated 371,000 deaths and 424,000 cases of permanent disability.
Key points from this research:
Diagnostic errors can happen in primary care clinics, emergency departments, and hospitals
A relatively small number of conditions, including major vascular events, infections, and cancers, account for most serious harms from misdiagnosis
Vulnerable groups, including older adults and people facing barriers to care, may be affected more often
The National Academies report “Improving Diagnosis in Health Care” calls diagnostic error a blind spot in the health system and emphasizes that patients and families must be central members of the diagnostic team.
Why Misdiagnosis Happens
Diagnostic errors are rarely caused by a single mistake. They usually arise from several problems happening together.
Common contributors include:
Limited time in appointments
Incomplete medical history or exam
Test results that are delayed, misread, or not followed up
Communication breakdowns between different clinicians
Assumptions or biases, such as focusing only on the “most likely” diagnosis
Fragmented care, where specialists do not share information well
None of this is your fault. At the same time, there are practical steps you can take to lower your risk and to respond if something does not feel right.
How Misdiagnosis Affects You and Your Family
Health and safety effects
Misdiagnosis can lead to:
Delays in getting the right treatment
Unnecessary treatments or procedures
Worsening of the underlying condition
Avoidable hospitalizations or complications
These harms can be life changing.
Emotional and financial impact
You might experience:
Feeling dismissed, anxious, or “crazy” for what you feel in your body
Loss of trust in health care providers
Extra costs from repeated tests, appointments, and medications
If this sounds familiar, it does not mean you are “difficult” or “overreacting.” It means your concerns deserve serious attention.
“That Does Not Sound Right”: Warning Signs To Pay Attention To
Debbie, a Care Advocate at Understood Care, often tells patients:
If you go to your doctor, hear a diagnosis, and your first thought is “No, that does not sound like what I am going through,” that is a signal to pause, ask more questions, and consider a second opinion.
Here are signs that your diagnosis may need another look.
Your symptoms do not match the diagnosis
Consider asking for a careful review if:
Your main symptoms are not explained by the diagnosis you were given
Your clinician does not examine the area that hurts or worries you
You are told “it is just stress” or “it is just age” without much evaluation
You can say:
“Can you explain how this diagnosis fits my symptoms?”
“Are there other conditions we should rule out?”
Resources from the National Academies and AHRQ stress that patients’ descriptions of symptoms are a critical part of accurate diagnosis.
Your questions are brushed aside
Communication problems are a major contributor to diagnostic errors. Red flags include:
Your questions are interrupted or answered vaguely
You feel rushed and leave without understanding the plan
You are discouraged from asking for more details or from bringing someone with you
AHRQ and the National Institute on Aging (NIA) highlight that patients who ask questions and share their concerns clearly help reduce the risk of errors.
Your treatment is not working as expected
Seek follow up if:
Your symptoms are getting worse, not better
You develop new or severe symptoms that were not discussed
Medications cause serious side effects without a clear plan to adjust them
You can say:
“This treatment does not seem to be helping. What else could be going on?”
“Given these new symptoms, could my diagnosis be incomplete or incorrect?”
Your Rights: You Can Question Your Diagnosis and Ask For a Second Opinion
Debbie reminds patients that part of their rights in health care is the ability to question anything related to their care, including the diagnosis.
While specific rights can vary by state and health system, many patient bills of rights and hospital policies include the right to:
Receive clear explanations about your diagnosis and treatment
Participate in decisions about your care
Refuse a recommended treatment, within legal limits
Seek a second opinion from another qualified professional
The Joint Commission’s Speak Up program encourages patients to speak up if something seems wrong or confusing, and to know that they have rights regarding their care.
You are allowed to say:
“I do not feel comfortable yet. I would like more information.”
“Can you go over the test results with me?”
“I would like a second opinion. Can you help me arrange that?”
How To Prepare To Speak Up
If you feel uneasy about your diagnosis, preparation can make conversations easier and more effective.
Expert resources from AHRQ, MedlinePlus, and the NIA suggest several practical steps.
1. Bring a written list
Before your visit, write down:
All your symptoms, including when they started and what makes them better or worse
Your full medication list, including over the counter drugs and supplements
Past diagnoses, surgeries, and major health events
This helps your clinician see the full picture and reduces the chance that something important is missed.
2. Prepare your top questions
Because time is limited, experts recommend picking three to five questions you most want answered.
Examples:
“What else could this be?”
“What tests or referrals would help confirm this diagnosis?”
“What warning signs should make me call you, go to urgent care, or go to the emergency room?”
3. Bring a support person
A family member, friend, or caregiver can:
Take notes
Speak up if you are feeling overwhelmed
Help you remember what was said
This is especially helpful for older adults or people managing multiple conditions.
4. Use tools designed for patients
AHRQ offers a Question Builder tool and preparation cards to help you get ready for appointments, speak up, and take notes.
You can print these or keep similar notes on paper or your phone.
When and How To Seek a Second Opinion
Debbie’s advice is simple:
If you hear a diagnosis and it does not feel right, or you feel not enough time was spent getting to the heart of the problem, do not stay quiet. Ask for a second opinion.
High quality sources, including MedlinePlus and the American Cancer Society, note that second opinions can:
Confirm the original diagnosis and plan
Offer different treatment options
Catch a missed or partially correct diagnosis
Situations where a second opinion is especially important
Consider getting another opinion when:
The diagnosis is serious, such as cancer, a major operation, or long term treatment
The treatment is risky, invasive, or has major side effects
You are not improving as expected
You feel your concerns are being dismissed or minimized
How to ask for a second opinion
You can say:
“This is a big decision. I would like to get a second opinion before we move forward.”
“Can you recommend a specialist I could see for another opinion?”
“Will you help share my records with another doctor?”
MedlinePlus explains that many people seek second opinions and that it is reasonable to do so when you have doubts or want to be sure.
How Understood Care Advocates Can Help
You do not have to navigate this on your own. Understood Care connects patients, especially those with Medicare, with personal advocates who help coordinate care and make sure your voice is heard.
What advocates can do if you suspect a misdiagnosis
Working with an advocate, you can:
Clarify your story
Go over your symptoms and history in plain language
Create a clear timeline to share with your doctor
Prepare for appointments
Write down questions you want to ask
Practice how to bring up your concerns in a calm but firm way
Coordinate second opinions
Find clinicians or centers that fit your insurance and needs
Help request records, imaging, and lab reports
Follow up on referrals and scheduling
Support you emotionally
Validate that it is okay to question a diagnosis
Stay with you through a confusing process so you are not facing it alone
Debbie and other Understood Care advocates often focus first on helping patients “find their voice.” That means making sure your concerns are heard and that you are not rushed through a decision about your health.
Making Future Misdiagnosis Less Likely
You cannot eliminate risk completely, but you can lower it.
Drawing on guidance from AHRQ, MedlinePlus, the NIA, and the Joint Commission, here are practical steps you can take.
Be an active member of your care team
Share all your symptoms, even ones that feel embarrassing
Tell your doctor what you understood from the visit and ask if it is correct
Ask what the “working diagnosis” is and what else they are considering
Keep copies of key records
Keeping your own folder (paper or digital) with:
Major test results and imaging reports
Medication lists
Hospital discharge summaries
can make it easier to spot errors and to share information when you get a second opinion.
Watch for gaps between visits
Diagnostic errors can happen when abnormal test results are not followed up or referrals are delayed.
You can:
Ask “What are the next steps and when will I get results?”
Write down who will call you and by what date
Contact the office if you do not hear back in the time frame they gave you
When Misdiagnosis Has Already Caused Harm
If you believe you or a loved one has been harmed by misdiagnosis:
Seek appropriate medical care right away
Address any urgent health problems first.
Ask for a clear explanation
Request a meeting to review what happened and what the plan is now.
Consider involving an advocate
Understood Care advocates can help you organize records, prepare questions, and coordinate new appointments.
Hospital-based patient relations or patient advocates can also help you navigate internal processes.
Look after your emotional health
Being misdiagnosed can feel frightening and invalidating.
Support from family, community groups, or mental health professionals can be helpful, especially after serious harm.
This article focuses on health and communication, not legal advice. If you are considering legal action, it may be appropriate to consult a qualified attorney who specializes in health care or malpractice in your state.
Frequently Asked Questions About Misdiagnosis and Second Opinions
How common is medical misdiagnosis?
Large analyses suggest that diagnostic errors contribute to hundreds of thousands of deaths and cases of permanent disability in the United States every year. The National Academies report that most people will experience at least one diagnostic error at some point in their lives.
What are the most commonly misdiagnosed conditions?
Research finds that a group sometimes called “the big three” causes most serious harms from misdiagnosis:
Vascular events, such as stroke and blood clots
Infections, such as sepsis or meningitis
Cancers, including lung, breast, and colorectal cancer
However, misdiagnosis can happen with many other conditions, especially when symptoms are vague or overlap with several diseases.
How do I know if I have been misdiagnosed?
You cannot always know for sure on your own. However, warning signs include:
Your symptoms do not match the diagnosis or are not improving
Your doctor does not examine you thoroughly or order needed tests
Your questions are dismissed or not answered clearly
You later learn about abnormal results that were not discussed
If this happens, it is reasonable to ask more questions and consider a second opinion.
Is it rude or disloyal to ask my doctor for a second opinion?
No. High quality sources, including MedlinePlus and cancer organizations, emphasize that second opinions are common and often encouraged for serious conditions. Many clinicians welcome second opinions, especially for complex diagnoses, because they can confirm or refine the plan.
You can frame it as:
“This is a big decision. I want to be sure we are on the right track.”
Will my insurance cover a second opinion?
Coverage varies by plan. Some insurance plans, including certain Medicare plans, encourage or even require second opinions for specific treatments.
Before scheduling, you can:
Call the number on your insurance card
Ask whether second opinions are covered for your situation
Ask if you need a referral or to stay within a specific network
If you have Medicare and want help understanding your coverage or finding a second opinion, Understood Care can help you review options and coordinate next steps: https://understoodcare.com/.
How can older adults reduce the risk of misdiagnosis?
The National Institute on Aging recommends that older adults:
Prepare a written list of concerns before each visit
Bring a trusted family member or caregiver
Keep an updated medication list, including over the counter drugs
Ask the doctor to repeat the plan and to explain the reasons behind it
Understood Care advocates are experienced in supporting older adults with complex health needs, helping them prepare for visits, clarify information, and follow through on care plans.
When should I contact an advocate like Understood Care?
Consider reaching out when:
You feel lost, rushed, or unheard during visits
You suspect a misdiagnosis but are not sure how to bring it up
You need help finding a doctor for a second opinion
You are juggling multiple conditions, medications, and appointments
An advocate can help you prepare, speak up, and stay organized so that your concerns are heard and your care is safer and more coordinated.
