Bad Experiences with Medical Care
Being a person of color in the United States, particularly a black woman, I'm very familiar with being treated differently. It's unfortunate, but that's the hard truth. This is the reality we live in. It's an awful feeling.
Stereotypes and discrimination in health care are alive and well
Then, I was diagnosed with a chronic illness. If I didn't think the poor treatment from medical professionals could get any worse, I was soon about to find out the hard way that a rare, chronic disease meant to some that you were a lying, drug-seeking, hypochondriac.
My first pre-diagnosis ER visit
One day out of the blue I started feeling sick. Then, I got really sick. I did what any other person would do when emergency care was needed: I went to the hospital. The first couple of times, I went to the ER on my own, right in the beginning before this disease took a turn for the worse. I remember when I first arrived: I waited for at least 3 hours before I was seen.
First impressions at the hospital
It was packed and COVID-19 was just starting to surface in the US. They never once put me in a room. They ran some tests in the triage area and had me sit back down to wait. After a while, someone who I don't even think was the doctor, came and told me all my tests were normal and I probably just had a little bug even though I could not stop throwing up. After that, I was sent home.
I knew something was wrong
After getting sicker and sicker by the day, my husband took me back to the ER. When I got there, it took forever to get into a room. When I did, of course, all the standard tests were run again with no remarkable results. They did however tell me that they thought I had an ulcer, so they started giving me medication to treat it. I'm a pretty compliant person, so I took the meds with the hope that whatever was going on would stop. It didn't so it was back to the hospital for me.
No diagnosis, bad attitudes and lack of concern
By this time, I was down 40 lbs in a month and had already been to the hospital at least 4 times. I was no further along in getting a diagnosis than I was when I first went in. I started noticing really bad attitudes from the doctors and nurses. "Did they think I was just making it all up?" I asked my husband. I was sickly skinny, my eyes were crossed and I couldn't even stand on my own but the attitudes...there are no words to describe it. I really couldn't believe I was being treated this way.
I couldn't believe the agression
They were aggressive with their responses every time I would ask a question. They were also treating me for an ulcer that I didn't have! There was one instance where I asked a doctor why I was being discharged again and she raised her voice at me and said, "we can't find anything! What do you want me to do?" Meanwhile, I was still constantly throwing up non-stop and was deteriorating daily.
The irresponsible care plan
I was finally treated by a neurologist. I was kept in the hospital for 3 days, sent home with medication, and informed I had NMO on a video visit. All the meds I was put on caused weight gain on top of the fact that none of them helped with my symptoms. I was quickly put on Soliris which helped with the attacks. However, it was 3 months later when I saw the neurologist again. By this time, I had gained 50lbs. Not once did she perform any physical evaluation after I told her my condition didn't seem to be getting any better. There was no care or concern about the weight gain from the meds she put me on nor did she make any attempt to interpret my MRI results. I was left in the dark.
Looking forward to a future with attentive care
For quite some time, I jumped from one doctor to the next due to poor treatment. I left my primary care provider for another due to being told to eat less food to lose weight after she was told I couldn't eat barely anything. One neurologist failed to give me steroids after a flare-up which resulted in more damage. Another doctor simply told me they couldn't help me. Overall, where I stand today, I can't help but blame the doctors for failing me leaving me in the condition I am in now.
I hope things change
I live as a disabled person. I can only hope that someday, doctors will become more open to the idea of rare diseases and treat them with a sense of urgency. Saving lives and giving patients the opportunity to have a better quality of life.
What have your experiences been like in health care settings?
Do you feel guilty when you need to rest?