RACISM IN MEDICINE
“...you feel a lot of things like when you're recounting stories you relive it but you might like relive the angers and the emotions”
- Nou Xiong.
Healing from Racial Trauma
When I was three, I remember having really horrible stomach pains. It kept getting worse to the point where I couldn't stand. My mom took me to the hospital several times when I would ache in pain and the doctors
would just give me pain relievers and send us home. Finally it got really really bad, to the point where I was unconscious. My family was scared for the month I was out. I can vaguely remember the moment I fell in my house out of pain, and even the uncomfortable tubes up my nose in the hospital. Now, I keep thinking about how so many people who got appendicitis, which was what I had, didn't end up in such a serious state like I did. Was this malpractice? Was it because as a HMoob family, we were not a priority? Did they not take my parents' broken English seriously? Would my family have been able to say anything if they knew it was malpractice in the moment and have the means to fight against the hospital? When I think about the way my mom is now, I can't help think it was moments like this, interacting with
systems that did not take her seriously, which contributed to her hypervigilance like saving all her documents and receipts, or not trusting services. I don't know who wrote on the back but they seemed to really miss me lol.
COVID19 & HMoob community
Jan 24, 2021
“I am in survivor mode and maybe, it's my trauma reflex, my inherited refugee trauma. Maybe there'll be some useful for you too.
Covid disproportionately affects communities of color and poor working class communities because of the systemic inequalities and policies that put all of us at risk for covid infections and mortality. After a Covid-19 infection, you are to navigate yourself through a health care system that is imperfect, inaccessible to many, and often racially discriminates against patients of color and differently abled persons. I've thought so many times how could my parents navigate this without me? They don’t speak English. Would they know my parents’ life? Who my parents are? Or are they just bodies to be tested with labs and translators to speak for my parents?
When you test positive, the clinic calls you. If you test at a community test site led by a clinic you will get a call. But if you test at a CVS pharmacy, you will not be called. Most of these testings are done via mobile phone. If you’re not savvy or illiterate, you better find someone who is. The person on the phone goes over the respiratory symptoms that you should look out: difficulty breathing when sitting, difficulty staying awake, and bluish fingers/lips. They encourage you to connect with your primary care provider (PCP). You’re lucky if you have one. I called my dad's PCP and they weren't too concerned. I called my mom's PCP. I found out she had left the practice and so the nurse told me about concerning symptoms for those with diabetes to look out for. I called my brother's PCP (after a week of trying to reach them) and they gave the same symptoms the testing clinic shared with me. NO ONE tells you to be on the lookout for any other symptoms that may develop, stroke-like symptoms, blood clots, dehydration, horrible GI issues, extremely low blood pressure, and anything this virus can trigger.
I was lucky to have a friend who is a family doctor on constant text message during my and my family's covid infection, not everyone has a medical doctor for a friend. During covid, my mom went to the ER twice. The first time she exhibited stroke-like symptoms (coldness and weakness on the right side). They refused to let me go in with her and said having a translator on the computer is good enough. Thank goodness there was a glitch in calling the translator that they let me back in with her. I got to her and just in time to hear them reach the translator.
The translator did NOT translate my mom's weakness and coldness on her right side. The translator only disclosed my mom's ongoing fatigue and coughing. At this point my mom was coughing so bad she couldn't talk. I had to, and as I've done on many occasions, translate for my mom despite having a translator on call. Had I not done that, they would not have diagnosed my mom's benign brain tumor, although they would have diagnosed her covid pneumonia.
The ER doctor said if my mom was in day 5 of her covid infection, she could get treated with an antiviral. This could only be done in the ER and yet, you're told to only go to the ER when you have difficulty breaking, staying awake, or turn bluish). No wonder the Hmong community says you only go to the hospital when you’re dying. Who would have known other therapies existed outside the walls of the hospital?
The second time my mom went to the ER was when my mom coughed up blood and pus with extreme chest tightness and pain. I called the ER department and spoke with a white male nurse. I told him that my mother is refusing to go in unless I'm in the room with her to speak on her behalf because she can’t speak English. She was also exhausted by her first visit. He said I could be with my mom, and that I could cite his permission. When we arrived, the white female nurse told me no, citing policy. I went to the car and received a call from male nurse I spoke with earlier. He said, “The translator is nice but they can't convey what you've been telling us about your mom. Come back, even the doctor agrees. Nurse [name redacted] said she didn't know and she said she was just upholding policy." They took so much blood and all her labs came back normal. It was only when she walked to the bathroom did they notice her drop in oxygen. My medical doctor friend told me to ask about treatment options, steroids for inflammation in lungs, antibiotics, antiviral? The ER doctor said they could give her oxygen to go home with and then later came back and said that could give her steroids. They finally decided to admit my mom and the internal medicine doctor came to see my mom. She said if my mom was within 10 days of her covid infection, she could receive an antiviral treatment. At this point, I'm annoyed because the first time she was within 10 days when they decided not to give her antiviral medication and now she was too late into her covid infection. The inconsistency was upsetting but also revealing about how medicine and treatment developed during this outbreak and who could or could not receive them. My mom refused to be admitted if she was only to receive oxygen. They assured her they would give her steroids for her inflamed lungs. She spent three nights in the hospital, alone, but always on fb messenger video call. She got better and received continual follow up by a home health care nurse per my request.
While my mom was still in the hospital, my brother, with epilepsy since a child, started vomiting from night time into the next day. He started losing his balance and had to hold onto things when walking. I called his PCP’s nurse, again emphasizing that they didn't call me back when I called a week ago to report his Covid positive result. It was a weekend and my mom was still in the hospital so I had my husband take my brother to the ER so I could stay by my phone in case there were updates on my mom. They prescribed my brother anti-nausea medications and discharged him. He continued to throw up and have diarrhea the next day. However, he began to lose all motor skills.
He couldn't walk and couldn't feed himself. He couldn't get out of bed. I called the ER again, and they said if he developed new symptoms then to bring him back in. My husband brought him back and they gave him more anti-nausea medications and antibiotics for a potential bacterial pneumonia and sent him home. They also gave him an experimental antiviral drug even though he passed the covid infection of 10 days. My brother (who is also cognitively delayed) refused getting care in a facility and so my husband, being the brother-in-law he is, said we could care for him as long as we had the equipment. They discharged him again.
By this time my mom was finally home and the first night back, she asked her home health care nurse to check her son. He was a white male nurse who had a brother with a similar condition to my brother’s. He told me his blood pressure was alarmingly low and could indicate severe dehydration. He encouraged my brother to take his anti-nausea meds religiously. That night was the roughest night of my and my husband’s caregiving life. My brother suffered constant vomiting and diarrhea. With my brother’s involuntary movements and jerking of head and limbs and his uncontrollable cough, we couldn't put him in the bath to clean him. I took my mom’s hospital wipes to clean my brother.
Morning came too soon. My brother laid motionless on the couch, unable to stay awake. If you moved him, he would jerk uncontrollably. My husband handfed my brother. I was on the phone with so many of my brother's nurses (his community care nurse, his PCP nurse, his neurologist nurse) and they all said he needed hospital level care. My mom's home health care nurse, this time a white woman, came by and looked concerned. My mom asked her to check him, and she said couldn't because of policy. On the phone, my brother's nurses told me that my brother needs more than nursing home facility care, he needed high level hospital care. Because my brother refused care in a facility it was hard to force anything else, even adult protective services wasn't going to intervene unless there was evidence of abuse or neglect. So in order to get the hospital to admit my brother, I had to bring my brother back to the ER (or call an ambulance) and declare on the spot that I cannot take care of my brother. Once on their territory, they would have to figure out a plan of care for him. My brother was upset about this plan, but after scaring him that people do die from covid, he reluctantly let me take him by car to the ER.
When I got to the emergency room, I walked into the ER asking for wheelchair assistance and a nurse. The secretary asked, what's wrong with me that I would need a wheelchair. I was fuming by this point. I said, it's for my brother and he can't walk and he's covid positive. She asked how many nurses and so I suggested two nurses. The nurses showed up, and one white woman nurse asked me if my brother could get out of the car. I told her “No, that's why I asked for assistance.” She didn't realize the severity of it until she tried to get him out and his head just kept jerking and hitting the car door. She asked me if he had a stroke and I had to explain his condition to her. She just looked at me like I did something horribly wrong but maybe I looked at her the same way. We probably couldn't hide our faces. After he was in the ER, the ER doctor came by and listened to me detail my brother's condition. He agreed on the spot that my brother needed to be admitted. Finally.
We are still not in the clear. It's been 5 nights since he's been hospitalized. I call everyday, morning and night, for updates on my brother. I keep asking why he can't walk and there's no answers. Through it all, I've realized how biomedicine treats differently abled persons. They are often treated subhuman. If you are lucky to find a doctor or a nurse who has a family member with disabilities, they seem to care more. I fight everyday to know how he's doing, to make sure I get answers.
I've learned that policy can be bent, if you fight hard enough or if someone decides to bend it for you. I've learned you have to know what to say and what to ask to get what you want. I've learned to lean into my gut feeling, even if that's distrust. That distrust is knowledge because the system is not equitable. I am exhausted fighting. I recognize that I am in a better position than others. Being middle class and educated wasn't enough to protect us from other inequities that impact health. I am lucky to have the love of so many friends and family who constantly checked in on me, sent me food, money, medicine, snacks and toys to keep the kids occupied so I can continue calling and fighting. You all have sustained me. If you ever have covid, take all the help you can get and fight for you and your family's survival. They say fatigue is the longest lasting symptom of covid. Your limbs feel like dead weight. Maybe another longest lasting symptom is fatigue of the healthcare system and its barriers. Going to my mom’s follow up appointments, I got asked twice if my English was good. These moments are always a reminder that Asians will always be seen as perpetual foreigners no matter how long we’ve lived in the states or how educated we may be.
January 24, 2021