What is My Doctor Writing About Me?

Art: Robin Mead

I thought I always read all my medical records. I read everything they gave me after every appointment. When I got the disability decision from the judge, I was shocked. It was full of quotes from my doctor that I had never seen before. – Ivy  

Am I Getting My Full Records?

Many patients think that they are reading their full records when really they are just reading visit summaries or online records. Ask yourself these questions:

🌟 Did I sign a form requesting my records?

🌟 Did I pay money for them to give me my records?

If the answer is no or no, you may not have not seen your full medical records.


🌟 Some doctors include “mental status reports” in their notes. These may include if the patient is alert, oriented, able to remember things, and able to hold a conversation.

🌟 Some doctors will write about what you are wearing and if you are bathed and appear groomed.

🌟 Some doctors will note if a patient uses medical equipment (wheelchairs, canes, walkers, etc) during the visit, and will note observations about how you walk, sit or stand.

🌟 Many doctors will observe a patient and write down their observations. These observations can be much more important than what you say to your doctor.

🌟 Some doctors will write down things a patient says, including personal information, stories the person tells, family information, and life activities.

🌟  Some doctors will scan in letters or papers that you hand them or email them.

🌟  Some doctors will write their opinion about whether you are following treatment. For example, when a patient stops taking meds, one doctor might write “Discontinued medication due to severe side effects” and another doctor might write “non-compliant with medication.” There is a very big difference between these two things.

🌟 Some doctor’s will say one thing to you, but write down something completely different.

🌟 Some doctor’s will take very few notes, and will not include any of the important information about your symptoms and limitations in their records.

🌟 Some doctor’s offices have computers that auto-fill background information into the treatment notes. This means if something is incorrect in the auto-fill information, it will keep being incorrect on every single record from every single visit, until you discover and fix it.

The only way to know what your doctor is including in your records is to request all treatment notes and read them yourself. Having copies of your records may also help you if your doctor moves or the practice shuts down.

Jane’s Story

I cannot stress this enough: YOU MUST READ YOUR RECORDS. My doctor always told me that he believed I was disabled and he understood how much I struggled. Then I read my records.

Over and over, he had written that I “alleged” pain but my demeanor was happy and joking so the pain must be mild. He wrote that I was exaggerating symptoms. I do try to stay positive through pain. I never imagined my doctor would write that.

Darlene’s Story

This is absolutely true! I am a paralegal and have worked on cases for personal injury paralegal, Workers’ Compensation, Social Security and state retirement disability.  

Your full medical records are so much more extensive than the sometimes worthless summaries they hand you, or make available on the patient portal of their website.

Complete records will also include differential diagnoses (a list of what MIGHT be wrong), information on drug and alcohol use, lab results, treatment plans and much, much more.

The most disheartening content of the complete records can be errors and misstatements. I have seen so many medical reports that are blatantly wrong, and ultimately harmful to a person’s lawsuit or disability claim.

Another reason to get copies of your records is that doctors can purge their records after a certain number of years, so previous records could be lost forever. Those past records can help establish a decline in health, changes in physical and mental abilities, and other diagnoses that you have.

We are all our own best advocate when it comes to our health and well being! You have a right to get copies of your records.

– From Darlene McKee Flynn

My doctor wrote that I was neat and clean and well-dressed and well-groomed and alert and oriented. I don’t know how he even wrote that when I was hysterically crying and barely functioning half the time. 

The judge’s denial said that my records were inconsistent. Even though my psychologist had really good accurate records showing I was disabled, the judge disregarded this, because of what my doctor wrote. – Ivy

Learn More

Common Topics that can cause problems in medical records

What Happens if I Don’t Read all My Medical Records?

What Do I Do If I Find Something Wrong in My Medical Records?

How to Collect All Your Medical Records (Keyword: All)

How to Get Psych Records

How to Find a Doctor to Help With Disability Documentation

Updated April 2018. Please comment below with stories, ideas, questions or suggestions. Please let us know if any links on this page stop working. If you found this page helpful, please share it with others by pressing one of these magic little buttons: 

6 thoughts on “What is My Doctor Writing About Me?”

  1. Hi Robin,
    I really hope this comment shows up.

    I made it a task to look up any info on the net on issues involving what medical staff is writing. Surprisingly, there isn’t a lot of coverage on this issue.

    I sought treatment for depression, and was diagnosed with it, and I wanted to go back on medication or something after trying to cope by my self.

    I will start with my experience that jarred me into alertness regarding this issue. After being called into the office by a junior Psychiatrist (or possibly a psych student), I answered the general questions on my mood and why I visited the hospital. This was all good and well.

    Then she started asking more detailed personal questions. The computer monitor was facing away from me, and everything I said she typed into the computer.
    At one point I felt uncomfortable giving out that much detailed information about my family background, not only for my privacy but also for my family’s privacy. What I was thinking about was, what if there is a data breach?

    I know well about data breaches because that is my area of expertise. Information security. So I casually asked if it was necessary to type all this detailed information down in the computer. She paused and looked at me, hesitated, stopped typing, and asked why I asked. I explained briefly about the issue of data breach. After a few more questions which she didn’t type, she left the room to report to the actual Psychiatrist that was going to see me.

    Then I was called into the office of the Dr. And here starts the disturbing behaviors.

    The look on this Dr.’s face was, how to describe it, kind of how you would look at a severely unstable mental patient, a mix of concern and judgement and a bit of distancing. This, just I was walking in.

    I sat down, and she set the tone for the “discussion” by her asking questions in interrogative manner. From the get go. This was quite jarring. Her first question was:
    “Why are you dressed like that? It’s not cold.”

    What was I wearing? Jeans and a hoodie, with the hoodie pulled up. I was clean, showered, and clean regular cloths, and it wasn’t even summer outside.

    She then went on to ask why I asked the in-taker if it was necessary to write all that detail. I again briefly explained about data breaches.

    She follows up with, “Do you trust people?”
    Mind you, all through out, she kept that look I described earlier.

    I responded “umm, case by case.”

    She asks “Do you think people are your enemies? Do you think people are out to get you?”

    This was kind of scary to me. It wasn’t so much about the question, as it was about the interrogative tone and accusative tone.

    I responded “No.”

    Suffice it to say, there were a few more questions like this but I’ll just add one more.

    She asked how I made a living, and I told her about my regular job, and also added that I earn additional income teaching thins like math. Her response?

    “Why? You’re not a teacher though.”

    She doesn’t know me, and she’s saying this within a span of 10 minutes.

    This was a terrifying experience overall, and it left a scar. It delayed my treatment because I did not know my options of seeking other doctors. It felt like if I try to ask more questions, people like her would jot down that I am defensive or something.

    Frankly I don’t even know what sort of powers the Psychiatrists have, like could she have diagnosed me with something right there and then and had me committed? Or given me a diagnoses that’ll follow me for life?? Honestly that experience did a lot of damage in how I view Psychiatry. This person should not have become a doctor. I wouldn’t have been surprised if she said I needed to drink holy water.

    That was the last time I saw this “Doctor” and this was many years ago, and now I am assertive and know my rights better, but, still there are a lot more things I need to understand more about the laws that govern treatment. It looks like I also need to have some basic understanding of what the Psychiatrists’ professional boundaries are so I know when they overstep them.

    Still, this negative experience is always on my mind when I visit the hospital.

    Thank you Robin and staff for exploring these issues as it seems they’re not well discussed. There’s a reason they say, “If you willingly go to a shrink, then you need to have your head examined.”

    I hope this experience I shared helps someone in someway.


  2. What happens if the progress notes appear to have some fabrications? I was very surprised to read that, upon questioning, I report having none of my symptoms. I’ve submitted a request for an amendment to my record. Is that enough?


  3. A private disability insurer included in their denial letter how my CFS doctor noted during my appointment, I “was alert”.

    They ignored everything the doctor said which supported my need for disability, such as how I met the criteria for CFS, (He named the agencies/organizations who created the lists, etc.) about the disease, treatments (antivirals, etc., &) the need for REST, etc.

    Another doctor listed my neuro & cognitive issues as well as depression, ADHD, etc.. The doctor clearly specified how the illness caused new symptoms & had also exasperated other symptoms, etc.
    The illness was the cause of symptoms becoming disabling, etc.

    The insurer said I hadn’t been in a psychiatric hospital for it, etc., & hadn’t added new psych meds, etc.
    (But, I had added one.)
    And, my CFS doctor advised against Vyvance, a new med another doctor had encouraged me to take.
    The prescribing doctor accepted this.

    They dismissed & ignored everything that supported my need for disability, & took other small details out of context to use against my case.


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