How Talking to Your Doctor Can Help (or hurt) Your Disability Case

Art: Robin Mead

When you are in your doctor’s office, and your doctor is writing notes, your doctor may be thinking about all kinds of things.

Your doctor may be thinking about your treatment and your health and the medical tests and the prescriptions and other patients and maybe what’s for lunch and how cute the nurse is. Your doctor may not be thinking about your disability case.

That is OK. Your doctor doesn’t have to be thinking about your disability case… because you will be!

Tips from readers on how to help get accurate medical records:

🌷 “When I go to a new doctor, I always let them know up front that if I’m rechecked by disability, I’ll need them to write a brief note explaining what my illness is and that I’m not able to seek or maintain gainful employment. So far, each have done that for me.” – Clarissa Shepherd

🌷 “I always remind the Doctor to add all of the symptoms I report in my medical records. I take a list of the official symptoms for ME/CFS and highlight all of them which pertain to me and ask them to add those to my medical records. Afterwards, I have a record of the visit mailed to me to make sure, its all being documented.” – Clarissa Shepherd

🌷 “After reading my records, I realized some of my doctors rely heavily on their intake nurses to take notes. Now every time I meet with the nurse before the doctor comes in, I am sure to go over each of my symptoms and all of my health updates.”

🌷 “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. He wrote that I was exaggerating symptoms. I do try to stay positive through pain. I never imagined my doctor would write that.”

🌷 “I always get copies of all my records and read them. If I see something is missing, at my next appointment I say: “ I noticed you didn’t document such-and-such, can we address that today?” I don’t expect doctors to spend longer than an average patient time-wise with me. If I need something more, I make a follow up appointment.”

🌷 “Tell your doctor about all your symptoms while she is writing in your records. If you tell her while she is examining you or while she is standing at the sink, she may not write it down.”

🌷 “Before my illness became severe, my family planned a trip to Disney world. We had saved up and planned for several years and already bought the tickets. I didn’t want to disappoint my kids, so I decided to go, even though I was too sick to travel. I used a wheelchair and spent most days in the hotel room. When I told my doctor about the trip, he wrote in my records: took a trip to Disney world. After my disability was denied, I collected my case file. The examiner had written: If she can take a family vacation, she can work.”

🌷 “When I am choosing a doctor, I always tell them I am on disability and ask if they will assist with my reviews if needed. Some doctors tell me right away that they will never do disability paperwork. Some doctors have an office policy about no disability paperwork.”

🌷 “I always request and collect full treatment notes so I can see what my doctor is writing about me. Never trust what you see in an online portal or visit summaries you will be handed at the front desk. These do not show you everything your doctor is writing.”

🌷 “I didn’t realize that my doctor’s were writing in my records any time I mentioned any difficulties at my job. I loved my job, but sometimes it was a struggle. The disability insurance company denied me. In the denial letter, one of the things that they wrote was that my medical records showed that the reason I had stopped working was because I didn’t like my job.”

🌷 “Before I see my doctors, I type out a sheet with my symptoms and my medications, so it’s all together in one place.”

🌷 “When you tell your doctor your symptoms, you should make a simple statement of how your disability affects you each day: How long can you stand or sit upright? How long can you type or speak? How well do your hands work? How well do you walk? Just a simple statement that ties together those symptoms into a picture for your doctor.”

🌷 “I made a special appointment with each of my doctors to fill out disability paperwork. I just knew they weren’t going to fill out the forms if I didn’t sit there with them. Plus, I wanted to be there to answer any questions they might have. If I wasn’t there, they would have had to guess, and they might guess wrong.”  – Violet

🌷 “Whenever I go to the doctor I spend the entire visit talking about my symptoms: which symptoms are severe, what kind of things I cannot do because of my symptoms, what kind of help I need, what side effects I am having from medications, and discussing my doctor’s suggestions for treatment. EVERY visit. This is the only thing I ever talk with my doctors about.”

🌷 I asked my friend what happened during her doctor visits and she said she always told the doctor how sick she was and the doctor was supportive and sympathetic and trying to help her. But her records were filled with notes about other things: activities, hobbies, family, kids, and other random things. There wasn’t much information about how sick she was.”  – Dahlia

🌷 “I discovered that most of my doctors were documenting my symptoms wrong (For example, I would report joint pain, and they would write nerve pain or muscle cramping).  So I decided to type up a health summary with relevant info from my medical history, plus new issues and symptoms since last visit. Then I also write and print a second page with a list of the things I need from the appointment (lab tests, med refills, paperwork to complete, urgent issues, etc). Presenting my doctors with a copy of my symptoms that is typed and in my own words has helped to get info documented more accurately in my file. I always leave it with them, in hopes they either scan it to my file or refer to it when they make their notes about what symptoms I was experiencing.” – Ann Eide

Talking About Daily Life

Some of our readers report problems with their disability case caused by chatting with their doctors about non-medical issues. It’s fine to talk with your doctor about your daily life, just make sure that what you say (and what your doctor writes) is clear. It’s common for doctors to write notes about travel, hobbies, child care, and other daily activities. You want these notes to be accurate.

“My Doctor Doesn’t Ask Me About Functioning”

It is very helpful if your records consistently include information about functioning. For example: Do You Having Difficulties Sitting, Standing, Walking? Do You Need Help with Bathing, Dressing, Eating, Household Chores?

If your doctor does not ask these kind of questions, it is very helpful if you can bring up this topic. You can also collect and read your records to see if this kind of information is being noted.

If you keep bringing up these topics, but they still do not appear in your records, don’t be mad at your doc. Doctors don’t know the Social Security rules. If your doctor is supportive, you may chose to talk to your doc and request a few brief notes on functioning be included in your records during your regular office visits.

Carnation had this problem and solved it by bringing her doctor a brief function form to review her symptoms at the beginning of each visit: Carnation Makes a Medical Outline

Learn More

💮  This page is part of the free online guide: The Sleepy Girl Guide to Social Security Disability 

💮  Learn more important info about this topic here: How to Have Doctor Visits That Create Accurate Records

💮 Art on this page by Robin Mead and Elizabeth D’Angelo.

💮 Page Updated: 7/1/19

💮 Please comment below with stories, ideas, questions or suggestions. Please let us know if any links on this page stop working. 

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9 thoughts on “How Talking to Your Doctor Can Help (or hurt) Your Disability Case”

  1. It is absolutely ridiculous that the doctor said that if she could take a family trip, she could work. This doctor has no idea what women/mothers do to serve their families at their own expense. I’m furious about that.


  2. I was going to a new nuerologist thinking that she was going to help in future disability reviews. She told me I gave focal epilepsy. Ali g came her NP and her didn’t have it, he I form her by email next appointment, she agree all the way?!! Now they both will jeopardize my SSDI and SSI And here I still have my traumatic brain injury epileptic seizures. From a doctor listening to this guy nurse practitioner! This is terrifying me! So I decided to quit her the nuerologist.


  3. I was going to a new nuerologist thinking that she was going to help in future disability reviews. Before she left, she gave me a sneer look with suspicion, are you receiving disability and need for me to help? I said, yes I do. She smirk. Than her N/P after telling explaining I have petit mal epilepsy. He examined and had a big sarcastic look, I don’t think you do! They changed my diagnosis, I still have bad seizures! Risk of losing my disability. I have my head trauma injury! No you have anxieties! This will jeopardize my SSDI health and income!!


  4. Outstanding article as usual. I’m glad I found your site or that you found me because I have learned
    so much from everyone’s contributions to this site.
    Hugs and prayers to all on this site.


  5. Hi Ms. Sleepygirl’ thanks so much for this site! Before I forget, or have a panic attack from the pain of severe chronic migraine, back pain, etc, etc,
    The answer to “When is a Shortform Disability Review Due?”
    30 days.
    I called Social Security, waited 45 min while trying2 figure out which Dr visits I had when,
    & a nice lady told me it was “..incredibly simple, just put ‘continued treatment’ in “Reason for visit” boxes.
    Thankfully, I read your site before proceeding.
    And good luck finding a psychiatrist in OC!
    After over 3weeks of severe stress, a lot of phone calls, reviewing calendar notes in tiny print, & finding out how I SHOULD be communicating with my doctors, I finished the form, only to discover I’d written ONE word in the margin.
    After 2 hrs fruitless searching, a pain flair up, & incalculable frustration with where the people who help me ‘live independently’ place things,
    I have to go buy, or ask for help getting white out. 😀
    But at least it’s about done.
    And for the record, it probably wouldn’t be without your site.
    So thank you again.
    When you have pain all over,
    Can barely make it thru the hour, much less the day, Dr. Visits are excruciating, frustrating, & exhausting, this form in no way takes “5 minutes.”


    1. Had a doctor brag about helping none of her patients get disability including her own father in law. Needless to say I no longer go to her. Honestly, I feel there are more doctors out there who do not want to help you whether its disability or a legal case–and I fear it comes from the business office of their practices. While i do understand that — what exactly do they expect patients to do? If these same doctors did better notes, at least you could use those. I feel like a big part of the problem is the disability organizations themselves–redundant paper forms, poor communication internally, poorly designed processes, incompetent staff, and their loaded agenda to deny you,


  6. When I got symptomatic in 2006, and in 2007 I started a spreadsheet with daily rows and columns including hours slept, depression level (1-5), anger/rage/explosive level (1-5) (I’m mixed state Bipolar), and for each of my meds. Since then I have expanded it to include calorie and type of calorie in, calories burned in direct exercise, steps, and floors climbed (I do much of my exercise climbing steps in my apartment building). That spreadsheet has followed me from California to Maryland, across 30+ medications, through lots of psychiatrists and therapists, and from Microsoft to G-Suite (Cheers to the geeks who got that- and by the way, I now use Forms to enter the data I haven’t been able to automate). I have weekly appointments with my therapist and my psychiatrist, and my usual report is gross numbers going back 30 days, the 1, 2, and 4 week averages, A graph of the last three months for sleep and mood scores, and a separate report that gives all my current meds and when they are taken (keep in pocket all the time too in case hit by bus and paramedics are trying to treat me before I’m conscious- they need to know because os issues with med interactions. Since all this stuff is on G-Suite, I’ve set up observation rights for Psychiatrist and Therapist so, for instance, if I’m trying a new med, they can see day by day any changes.

    Anyway, I hand the two sheets of paper with binder holes already cut to them when they walk in, and make sure they include in the records. Periodically (i.e. when manic and angry so lots of energy but I can’t go outside because I’m sure to lose it on somebody) I will drill down the data set, put together stats of each med I’ve tried against mood and other pieces. Pairs of meds that were used together. Seasonal Averages (I was able to show I didn’t have Seasonal Affective so I didn’t need to stare into the damn light box), and changes in amounts of meds over time (showing that I am not having gradual increases in the meds I am on that people worry are “habit forming” (why is Rx opoids habit forming, but opium on the streets is addictive? Oh, that’s right, racism…).

    I am a geek and this is how I have brought my geeky powers to bear on the issue of tracking my illness, for Social Security, and for trying to get better, and for the hope that others will one day do the same and there will be a large enough set of data points for other geeks to determine what meds are affective, what meds are affective for a subset of the population, and what meds are not affective.

    A geek can dream (of data points)…


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