I’ve been feeling a lot of grief this weekend after reading about Professor Amit Patel - a nationally recognized doctor & expert in the rare disease HLH - who died in hospital when medical staff refused to acknowledge his expertise in his own condition.
Many disabled and chronically ill individuals know how dangerous hospitals can be - but reading about a doctor (who had a spouse who was also a physician advocating for him) being unable to get the care he needed to stay alive? It’s terrifying.
I wrote about his death, my own experiences with medical trauma and the need for a safer system for all.
I see far too many chronic illness patients being dismissed from the ER for “faking”. Is there not a duty to run tests to ensure something isn’t missed before discharging someone as a fake? Given the consequences could literally be their life?
This happened to me years ago -
I had major OB GYN surgery and a week later was getting worse not better. Weak, in pain, swollen, loss of appetite etc. Went to the ER and was treated like a “nuisance” and asked what I “expected” after major surgery. I tried to explain I expected to improve a little each day - and I was clearly decompensating.
They decided I was faking and sent me home. This repeated 3 times over the course of a week - each time I was sent home without any tests.
Finally my then boyfriend took me in for a 4th time - literally carrying me to triage because I could no longer stand up. They got angry and said “we’ve already told her there’s nothing we can do.” He said he wasn’t taking me home to die. He demanded they run tests. The situation escalated but they finally acquiesced to the most basic blood work and an ultrasound. I’m incredibly fortunate they listened to him - and incredibly angry it took a man causing a scene to get me care.
Turns out I had a hugely elevated white blood count, a ferritin of zero and a hemoglobin of 63. I had a massive infected abscess in my abdomen that had been caused by an internal bleed left unchecked for weeks. I was rushed to emergency surgery and needed multiple rounds of blood transfusions and spent weeks in the hospital.
Had I gone home - I more than likely would have died. Had I been alone - I would have died. It should never be this way and from what I’m hearing from other patients it’s only gotten worse since Covid.
Please listen to your patients. We KNOW our bodies. Listen to women & marginalized individuals… don’t make us bring someone else to tell our story. Listen to people who come back over and over again - they clearly need help. Have some compassion and don’t assume someone is faking just because you don’t see an obvious issue.
Facebook is awash in people complaining that they don't know what's wrong with them and their doctors don't know either. It's Long Covid but doctors are forbidden by the state to believe in that so they just tell them they have no idea and imply that it's probably nothing. It's harrowing to see it over and over. #LongCOVID#WearAMask#covid #medicalgaslighting
If you want to feel old, it’s four years to the day since this doctor in China privately warned colleagues about pneumonia cases related to coronavirus (which turned out to be COVID).. only for his message to be leaked, to go viral on social media, leading to his arrest by authorities for spreading fake news.
A few months later he contracted COVID and died, aged 33.