– Guest post by Dahlia
– Art by Robin Mead
When my friend Petunia was applying for disability, she brought me a big file with all her records to look through.
Right away I said, “Where are the rest of the treatment notes?” She had no idea that the records online and the papers they handed her in the doctors office were not her full records.
She requested her full records and a few weeks later came back. This time she had a BOX with all her records to look through.
When I read my friend’s records, I felt like there was not much there. She has a LOT of visits, from a LOT of doctors, but they didn’t really say much. They just listed symptoms and diagnosis and medications and then there were random notes about her day-to-day life, kids, family, activities, and other things discussed during the office visit.
Looking through her records, she didn’t seem disabled. It made her seem like someone who just had a diagnosis, and list of symptoms, and a few prescriptions for medications.
Then I got nervous, because…. we have the same primary doctor!! My friend and I have the same condition, but my friend was more sick than I am. So, if her records were not good… mine would be even worse!
I immediately requested all my recent records. I had to wait three weeks for them to arrive. I was soooo nervous, and already asking for referrals to find a new doctor. Finally they came.
Guess what? They were excellent! They had clear information about my problems and how severe and debilitating my symptoms are, plus trouble I had with walking and standing, what kind of medical equipment I used, history of falls, and the daily activities I needed help with.
There was no reason for my friend’s records to be so different than mine. She is the same race and gender as me, and in the same general age range. Her main condition was the same as mine. She is very ill.
Why were her records so different than mine? I guess I will never know the answer, but I have a theory: My friend was not sharing enough with her doctor about her illness.
My friend does not like to complain. When things are bad, she still puts on a happy face. She also likes to please people, always wanting other people to feel comfortable. I suspect that she decided to become friends with the doctor and spent some of her time chatting about her life instead of focusing on her medical care.
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.
I wish I could be a fly on the wall in her doctor’s office to see what really happened.
💮 Page Updated: 7/1/19
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