By Dr. Akilah Cadet
"I hear you and I see you...I just don't agree with you" Those were the words from a Black male surgeon (who assisted my wonderful surgeon for my surgery) who discharged me against my will. I pleaded to stay in the hospital as it had been 4 days without a bowel movement and I was in a lot of pain. The surgeon rounded the morning he discharged me and told me my fear around a bowel movement was "all in my head" and I was "worrying" too much. He then took his hand an massaged my forehead with pressure to tell me to stop worrying and stormed out of my room.
Later that day when I asked for the charge nurse (RN) to figure out a more complete discharge plan and my concern around bowel movements the RN elevated it back to the surgical team. A nurse practitioner (NP) from the surgical team asked for my concerns where I expressed I have a history of gastrointestinal issues due to Ehlers Danlos syndrome, currently being on an injectable blood thinner, and having orthostatic hypertension (low blood pressure) that would make a bowel movement at home incredibly risky. I also explained to the NP that the hospital's responsible for my care 30 days post my surgery (something I knew as a former health administrator). The NP agreed and said she would send the surgeon down after he got out of surgery.
When the surgeon came down he repeatedly told me that I was worrying too much. I explained to him amongst tears and a shaky voice that I have rare disease and I'm at a higher risk for comorbidities. And that I understand their jobs to make sure I have the surgery but it's my job to make sure I don't have additional health problems as a result of the surgery. I echoed that I did not feel valued, seen or heard with my experience as someone who lives with rare disease so rare that it's one in a million. As he is an expert in surgery I'm an expert with living with EDS. I had what I would call a rare disease breakdown.
I poured out how hard it is to live with rare disease with not being believed, constant patient advocacy and always worrying about my progressive disability. How I worked with a pelvic floor therapist for over a year to regain function due to complications from coccydynia (inflamed tail bone.) How even though that every single day I'm in pain I'm able to run a successful company, show up as a friend, be there for my family, and take care of everyone's problems and how I just wanted to be taken care of for once.
I pleaded to stay in the hospital to have a safe bowel movement and was ignored in front of my mother, her husband, and my brilliant neuroscientist friend; all whom attempted to advocate for me to stay even for just one more night. I shared things that my mother has never heard before because I shield her from all the pain that I go through because I know she worries about me.
I said that I was going to tell him something that he wouldn't understand. I told the surgeon I live in grief every day mourning the person I was, the person I am, and the person I will be due to progressive disability and rare disease on top of my existence as Black disabled woman. How I could die at any moment due to my heart condition. How I worked tirelessly with the preop team a month prior to minimize any comorbidities/harm during surgery and post. I said if you get nothing from this conversation just know that you have to listen to people who live with rare disease because we know our bodies better than any provider.
I shared that my biggest fear of staying in the hospital was being ignored and that's exactly what happened. Every shift change I had to tell people I had EDS. No one cared as I repeatedly asked for heat packs to ease my chronic back pain. I told the surgeon how exhausting it was to not be able to rest and recover in the hospital because people didn't see me/my rare disease. I asked him to note in the chart that he discharged me without a bowel movement and reminded him he's responsible for my health for 30 days post. He said "you sound like a lawyer." I said "I sound like the former health administrator I told you I was."
The surgeon went up to my mom and said that I asked him on a date the night before (when I was with my father). I immediately said I NO! The surgeon felt it was appropriate to make fun of my tears and plea with a joke. But the joke was I was readmitted to the hospital (another UCSF hospital with excellent care) 2 days later with complications from no bowel movement in 6 days! This is the end but the beginning of the work I'll have to do to not be held responsible for his error.
