Chronic Snarkopolist: Blaming the Patient
Hello my loves!
The first time someone made me “wrong” for my health or how I felt I was only seven years old and was developing RA and lupus in my joints. I was in pain and I didn’t know why. The orthopedist who looked at my brother’s injured knee also looked at my feet (I ached in every joint but my ankles and feet felt the worst at the time). He said to my mother, “Perhaps she can lose weight.” At the time I was not a fat child and was very active. It was not a solution and I remember learning only, “If I complain someone will tell me I am fat.”
I relearned this lesson in my adulthood after being injected with enormous amounts of cortisone and gaining weight. My physician at the time said to me, “Your pain will go away if you lose weight, you should join weight watchers.” Again, at the time, I went from having no pain to being in significant pain, and my weight was increasing only because of medicines and not because I was shoving food in my body.
At the time a friend had undergone significant medical procedures and lost 40 pounds. Her doctors were concerned about her loss. Her back hurt. Rather than blame her weight, they actually had to blame something else, like her mental state. They sent her to therapy. She was also in pain, and when she got help for chronic pain she went on to have a very productive life.
It was during this time I realized that medical interventions themselves are labeled to make the patient wrong. If someone doesn’t do well on chemo, the doctor is taught to will write, “Patient failed treatment.” instead of “current treatment not suitable for this patient.” They say, “Patient denies using cigarettes.” Instead of “This patient is not a smoker.” The very language is one of denial, one of failure, one of being wrong. It is probably because doctors have forgotten they are supposed to practice half an art and half a science and have started using a language that is cold and not personal and they have sometimes even called patients a bed number or a disease. Hopefully we can get this to change if we continue to discuss it out loud.
As I learned more about being a patient and watched people being both successful and unsuccessful, I realized why it is so hard to be a “chronically ill” patient through a lifetime. It is hard to even be a short-term patient. I have listened to doctors talk about how difficult it is to know so much and not trust they or their family members will be getting the proper treatment. Even doctors and their family members get sick. No one wants to be a number or a disease. We need connection and realness and relationship in medicine.
One friend, who is also a physician, told me, “The most difficult part of being an educated patient is actually knowing what can go wrong. If you don’t know you just trust things will right. And if they don’t, you never know and so you don’t realize you were failed.” In some ways, ignorance can be bliss. When we begin to understand that we can be blamed for our treatments that are not going well OR our own bodies turning against us, OR even being empowered and asking for better answers, we can feel overwhelmed. We can also get better treatment and much better results. It is worth it, but it is a much longer haul than sticking our head in the sand and pretending and not knowing. A life of awareness and focusing on what is going on takes TIME. It takes effort and connecting and building relationship with ourselves and with our doctors.
It isn’t only medical words that label people as wrong. I have had friends tell me, “I would rather die than inject myself with needles every day.” Or, “I would die before I would take chemo.” And I have not always had a good answer to that. Sometimes I stay silent. Other times I say, “Ahh- an interesting choice – one we all get to make.” It always feels like such a slap in the face to those of us who make the choice to be alive and live WELL. Other times it feels like they are telling me I am wrong to choose medical interventions over death and that I should give up. Perhaps it is their fear, but it hard not to take it personally each time I hear it. And each time I hear those blaming words, it takes work to have those conversations, and I only have them with friends I care about, never strangers.
When we don’t feel good all this effort with doctors and friends (and our family and our romantic partners) is WORK. And work is harder for us when every job is asking us to do more. We are not wrong. I want to recognize that now. No one is wrong for our health. No one is wrong for what we were born with or what happened along the way. If we have done things to create ill health, we can do things now to set them right. And even if we have engaged in behaviors to create bad health, our doctors need to be willing to work with us, help us find therapy and specialists to create better patterns and health. Blaming does not work. Being wrong is not a healthy place to live.
What do you think? What are the best strategies for dealing with your doctors and healthcare providers? Have you ever been made “wrong” for your health? Has anyone ever made you or your decisions feel “right?” Which one works better for you? Which one makes you feel more directed and more alive? Please tell me! I need to know!
I will see you same time next week! Kiss kiss!
Tags: Blame, blaming the patient, chronic illness blog, chronic illness column, chronic illness support, chronic pain, Chronic Snarkopolist, doctor patient relationship, doctor's language, finding our way through chronic illness, learning how to interpret what doctor's say, learning how to speak to doctors, learning lessons with doctors, medical language, pain, patient blame, positive versus negative health approaches