A long time ago (well, 20 years) I was pregnant with twins at age 35 and I had placenta previa. This was a high risk pregnancy. My OB sent me to a perinatologist for the ultrasounds, amniocentesis, and to make sure that both babies and me were doing ok as the pregnancy progressed.
This was all ok. This was a highly regarded perinatologist. But there was a problem. I was never more than a very interesting high risk pregnancy. I was never an actual person. At first this was annoying but one visit it became unbearable. Early visits he had wanted to admit me to his special hospital unit for pregnant mothers on bed rest. My doctor (who was awesome) had me on what she called modified bedrest. I was at home and I stayed in bed most of the time. I was allowed to eat dinner with the family and once a week I got to go out as long as I rode around in a wheelchair. This helped me keep my sanity because in case you aren’t aware bedrest is mind numbingly boring. So, at this particular visit around the 7 month the doctor stated that older mothers have a higher mortality rate and therefore he wanted to enroll me in a study to track my blood work and this would require additional amniocentesis (these hurt and when you have twins they do 2 of them at a time). Remember that I am not sick and that I am otherwise very healthy. But this doctor wants to track me to see if I die (this is what I heard). And this in no way benefited me. I complained to my doctor. I ranted. And I basically fired him. My doctor agreed that I did not need to see him anymore. Any ultrasounds, which were primarily to track growth of babies and status or the placenta, could be done in her office.
Fast forward to November 30, 2018.
I am in the emergency room with chest pain and shortness of breath. I think I am having a heart attack. I have had x-rays and CT scans and blood drawn. The emergency room doctor comes in with results of all these tests. No heart attack, not pulmonary embolism, you have a large mass in your chest that is probably some type of lymphoma, you will need a biopsy, it is shift change time so my replacement will do the rest. Um….did you just tell me I have cancer? But he was gone never to be seen again.
The replacement when someone finally came around was a resident who didn’t really help much. She only wanted to know if the steroids and breathing treatments they had given me had helped at all. My answer – no. She said ok well we are sending you home. You will need to schedule the biopsy, handed me a slip of paper with a phone number on it (the wrong phone number by the way) and told me I could take Tylenol for the pain I still had. Just before they discharged me another doctor (resident’s supervisor) came in. He said the same thing about needing a biopsy and followed that with “no tissue, no issue”. I suppose that was meant to be funny or comforting, but it was anything but.
All of the doctors in the emergency room failed to see me as a person.
Fast forward again to the start of my chemotherapy. I am in the hospital. I am physically connected to two IV bags (one with chemo drugs and one with maintenance fluids). Everyday a doctor does hospital rounds – visiting each patient, presenting the diagnosis and treatment to a group of others to include medical students, residents, nurses, social workers, pharmacologists. From outside my door every morning I hear, “this is a 54 year old female presenting with a non-hodgkins lymphoma….” and then the entire group enters my room and the doctor continues to talk to the group as if I am not there. He does a brief exam and then asks if I have any questions. I ask if I can take a shower. His answer was no because of the risk of infection and also everything is about the lymphoma and chemotherapy. I am not happy. There is an entire blog post about this.
Just like with the perinatologist and the emergency room doctors this doctor does not see me as a person. In their eyes I am a pathology.
I had a lot less control over which doctor did hospital rounds. I complained to my doctor (who is awesome) and she fixed the shower issue. But I still had to figure out how to deal with Dr. No Showers. I couldn’t exactly fire this doctor unless I went someplace else for treatment and that would require changing my doctor as well.
I started by asking questions that involved dropping the fact that I had worked as a research assistant at Harvard University Medical School studying the tropical parasite schistosomiasis mansoni, that I was ABD and had a strong background in statistics, and that my current job involved measuring lots of things. All of this is true. And I asked hard questions. The nurses loved to mention the fact that I live on a boat. Eventually, he asked me questions about me. Tell me about living on a boat. What is your job?
And then the real break through. Just after the second chemo cycle I quit drinking coffee because coffee was too acidic for my stomach. I switched to an herbal tea. I took this herbal tea with me to the hospital for my third chemo cycle. And Dr. No Showers noticed on rounds one day. He asked, “Do you drink tea?” I told him I did and why. We had an entire conversation about tea and the next day he brought me one of his teas to try. I had stopped being just a pathology and I had become an actual person.
For anyone who is going through any kind of medical/health issue, remember that when the medical professionals treat you like you are nothing more than what is wrong with you, you can push back. You can remind the doctors and nurses that there is more to you that what is wrong with you. You can remind them that you are not a pathology.
I am NOT a pathology!