What this physician mom learned about shame [PODCAST]

 

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“I cry often enough that my kids almost gleefully expect it, checking me for tears during movies or shows, shaking their heads in mock dismay when they see that their prediction is correct. I’ve cried many times at home, watching screens, reading books, talking on the phone, and at work, where I am a doctor who cannot always suppress my emotions. And I’ve cried in front of health care providers as a patient or family member, something that I have the most trouble admitting because the tears were virtually involuntary and unwelcome in a health care space that did not feel safe to me. In that setting, there is shame.”

Christine J. Ko is a dermatopathologist.

She shares her story and discusses her KevinMD article, “Is there more to patient safety than preventing medical error?”

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Hosted by Kevin Pho, MD, The Podcast by KevinMD shares the stories of the many who intersect with our health care system but are rarely heard from.

Transcript

Kevin Pho: Hi, and welcome to the show, where we share the stories of the many who intersect with our health care system but are rarely heard from. My name is Kevin Pho, founder and editor of KevinMD. Rate and review the show at KevinMD.com/rate. Subscribe at KevinMD.com/follow. Today we welcome back Christine Ko. She’s a dermatopathologist. Her latest KevinMD article is titled “Is there more to patient safety than preventing medical error?” Christine, welcome back to the show.

Christine J. Ko: Thank you, Kevin. Nice to be here.

Kevin Pho: So for those who didn’t get a chance to listen to our first episode, I think it was over a year ago, just briefly share your story and journey to where you are today.

Christine J. Ko: Briefly, I’m a dermatologist and dermatopathologist, so I’m a physician, and I’m a mother. I think parenting has actually been the hardest thing I’ve ever done. We talked about that a little bit last time, but this past year has been the most difficult year for me. In addition to the COVID pandemic and the work stress that I think we’ve all been feeling, as well as home stress with homeschooling for a lot of 2020 for many parents, and all that is associated with it, having to quarantine if anyone was exposed, that risk that’s just ongoing and chronic, my son developed an acute vision problem. He didn’t have one before, and all of a sudden he literally could not read or see far. So he was sort of functionally blind, and we had many, many ophthalmology appointments to try to figure out what was going on, as well as optometry appointments, and the two fields do not necessarily see eye to eye on this.

We finally got a diagnosis that I had never heard of, called Streff syndrome. But then we went into vision therapy, which optometrists believe in and most ophthalmologists apparently do not. It was intense, and it was a lot of work, a lot of visits, and a lot of questioning of myself. Streff syndrome has a name, but part of it is stress, either visual stress or mental stress, in terms of why it appears in someone. So I really had to question whether there was some trauma, stress-wise, to my son, and is it me?

Quite frankly, in more than one health care visit, it was implied. Not exactly “Have you considered that this might be related to you, or your stress, and the pressure that you might be putting on him?” No one actually ever said that, but it was implied, and one time it was even said a little bit more directly to me by the vision therapist. So the article is about that, how I actually started crying, and he felt very uncomfortable, but he sat with me. I didn’t want to be sitting with him, but I didn’t have plans to change to a different therapist at that point, so it was important to have a conversation with him.

Through it, I realized that I’m sure a lot of patients feel like this with me, that they don’t want to share certain things, but they have to in order to get the right medical care. It might be embarrassing for them. For me, I realized it was very shaming, what he had said, to think that I’m a bad mother, basically, bad enough that, you know, the vast majority of kids do not have a vision issue like my son did, and wow, how awful of a mother am I to potentially have induced that? That’s how I felt in the moment, and how I felt at low points at different times.

The reality is I know on a logical basis that it is in no way my fault, and I am not the kind of parent that puts so much pressure on their kids. Despite my being Asian, and maybe on the surface people could consider me stereotypically like that tiger mom, I’m actually really not. The vision therapist even said so. He’s like, “Well, the only people that can really answer what type of mom you are are your kids.” So I can say whatever I want. And I recognize that sometimes you do everything right, and still a child can have various problems, including medical ones. I think if a child has leukemia, no one’s going to blame the parents.

So it’s just been a very difficult year of being on this sort of ledge of a medical diagnosis, and yet there is, to some degree, some amount of stress, or literally hysteria, within the handout that they gave me. And a lot of self-reflection and awareness of, you know, what am I doing with my life?

Kevin Pho: Sure. So you talk more about that story in your KevinMD article titled “Is there more to patient safety than preventing medical error?” So let’s unpack what you said in that exam room. When it was implied that stress was leading to some of the symptoms that your son had, take us into that moment. What were you thinking, and how did you unpack that when that clinician implied that to you?

Christine J. Ko: Well, I’m a crier. The way I express my emotions, whether it’s happiness, whether it’s sadness, whether it’s fear, whether it’s anger, whether it’s shame, I will cry. So on the surface you’re like, “Wow, this person’s crying,” but literally, something makes me happy and I will cry as well. I realized through the past 15 years, ever since I had kids, that I especially initially was very emotionally unaware and unable to label how I was feeling.

So in the moment when he said that, the first thing I thought was, “I’m about to cry.” I knew I’m not happy, and I didn’t know right away that I felt shame. That took me a while. But I knew I was going to cry, and I knew that I didn’t feel good. That was all I knew in the moment that I felt, because I was flooded with that emotion.

Kevin Pho: Were you surprised when the clinician said that?

Christine J. Ko: I was surprised. At that point we had been seeing this vision therapist for four months, every two weeks for 30 minutes. And well, it’s interesting, because he had previously suggested that I’m a pushy mom. I didn’t cry at that point, but I was sort of like, “Why would he think that?” This was probably several months before. I came home, and I was upset, and I was literally eating Nutella with a spoon in the kitchen. My daughter comes down, and she sees me spooning Nutella rapidly into my mouth, and I turn around. My feelings are written on my face. I don’t have a mirror with me, but my kids actually know me pretty well, and she’s like, “What’s wrong?”

I told her, “Well, basically he said I’m pushy, and I don’t think I’m pushy. But let me ask you, do you think I’m pushy? You’re my child.” And she was like, “Well,” and then she becomes this psychologist, and she’s like, “Why do you think he said that?” I was like, “Well, there are reasons he said that.” Because I didn’t trust the practice at first, I said I’m coming in the room during these therapy sessions. This was the first time I met him, and he was like, “Well, normally the parent sits outside, and here’s a chair where you can sit, and we’re just going to be right here in this room, and you can listen in. But the door will be almost shut. It’s better if the parent’s not there.” I said, “Well, I actually don’t trust this practice yet, and so I’m coming in, and my son asked me to come in before we got here, so that’s what I’m going to do.”

And she just started laughing. She started literally rolling on the ground, and she was like, “And you think there’s no reason why he would think you’re pushy?” And then it made sense to me. I was like, “OK, yeah, I guess I acknowledge that.” But my son wanted me to be in the room, so he just didn’t understand that piece. I think he didn’t see behind the scenes of that. I think the bottom line is I realized that I definitely have been and can be misinterpreted and misperceived by others, but that happens, I think, to literally everyone. So it’s not like I’m special in that way.

Kevin Pho: So tell me what happened next. Once you talked to your family about this and had time to process this, tell me what happened next in relation to your relationship with your son, and potentially your son’s symptoms, after you were told to process this.

Christine J. Ko: Yeah. So that was back in January, and my son’s vision was already improving, I think due to vision therapy. We were doing vision therapy homework at home, and part of the difficulty through the years was he hated it. So yeah, I pushed him to do it. My son knew that I was going to make him do it. I did it with him, but really for 15 to 20 minutes every day we were doing it. And he would say, “You know, I hate this. I hate it, but it’s actually helping, so I know that we have to do it.” And I think there are things that we all hate, even as adults. I call them my adult tantrums. I’ll throw a tantrum before or after, or in the middle of doing it. So I think he was just having a normal reaction.

But basically what happened is I talked to my family about what I had been told, and asked whether it’s me, kind of, or whether I’m contributing.

Kevin Pho: Sure. What did they say when you shared that with them?

Christine J. Ko: My daughter and my husband said, “No, it’s not true.” My son is younger; he just turned 12. I think honestly we don’t know why it happened. I tend to think that it’s something his body had to go through, sort of like a puberty experience. And I think there’s a genetic component, because through vision therapy, because I was in the room, we realized something. He accepted vision therapy, but sometimes he would say, “OK, we’ll do this,” so that I knew then what he’s supposed to be seeing, and I don’t see the right way either. And when my daughter was in seventh grade, she was having vision problems, but they were not severe. But I realize now that she probably does need some minor form of vision therapy, and it’ll help her, because she has trouble reading. She’s not dyslexic, but she has some trouble reading.

So I think our family recognizes that there’s this genetic thing. And perhaps, since they also say it’s not just mental stress but just visual stress, just too much stress on the visual system, meaning too much for us to handle. I think there are extreme forms of that, where you see something horrible and then you go momentarily blind for some period. That’s been described. But to some minor degree, less than that, he didn’t see anything horrible, actually. But I think maybe partly because he is deaf as well, he was taxing his visual system to a degree that was greater than his visual system slash brain slash body could handle.

Kevin Pho: Now, when that clinician approached you with what was clearly an uncomfortable implication, how did that interaction go? Do you feel like that clinician could have improved the interaction when he implied that stress may have been coming from you? Is there something that could have been done better in that interaction, or did he do a reasonable job of that?

Christine J. Ko: I think he did a reasonable job after I started crying. I was about to turn away and just say OK, because the visit was over and he was just explaining some things. I was going to turn away and say, “OK, well, we’ll see you next week,” with my face turned away, and just leave. Instead, I looked at him, and I don’t remember exactly what I said, but I said something like, “Why would you say that?” And I think he was sort of taken aback, because he was like, “What do you mean?” Because I don’t think he thought that he said anything. So I may have also misperceived a little bit what he said.

But I said, “I think you’re saying that I have some role in this, and I just want you to know that that may be, but I don’t think that how you said it just now is really useful, like helpful.” And I started crying when I was saying that, and he was really uncomfortable. But what he did was he immediately sat down, because we were both standing at that point, since the visit was over. And he said slowly, “Please sit down.” So I think that was helpful, because he made me sit down, and then we talked for probably about 30 minutes. So I was lucky. I think we were his last appointment of the day, and he took the time. He was willing to take the time.

And I will say that since I’ve known him since the fall, I do think he’s a caring individual, and there wasn’t malicious intent. He didn’t mean to hurt my feelings, which is why he sat with me. But I think he actually has been unaware throughout of how I’ve really been feeling, and how we as a family, and especially my son, have been impacted by this, by the vision loss. And it’s just sort of like, “Well, life goes on,” kind of.

I think I do that to my patients too. I don’t really know what it feels like to have a rash every single day, and it’s itching like crazy and it’s driving you crazy, and you work at the same time, and maybe you can put on the medicine when you need it, and you’re in a meeting, like, for five. But we don’t think about those things, and we seem callous, just like, “Well, why didn’t you use your medicine?”

Kevin Pho: We’re talking to Christine Ko. She’s a dermatopathologist. We’re talking about her most recent KevinMD article titled “Is there more to patient safety than preventing medical error?” Christine, as you reflect on this episode, tell us some things that you’ve learned from it, and maybe some take-home messages that you’d leave to the KevinMD audience.

Christine J. Ko: So one thing I’ve been learning recently is about shame. I think the natural reaction is to turn away from it, both when I feel shame, I want to turn away, and the people around me want to turn away, because they don’t want to embarrass me or shame me anymore, right? So you almost think it’s a considerate thing to turn away. We get uncomfortable, and we just sort of move away, and it’s OK if other people move away. But I realize that it benefits me.

Shame is very uncomfortable, but we all feel it, and it’s all over medicine, everywhere. I think I, without intent, shame my patients, and I’ve been shamed as a mother, like I just described, but also in what happens in home life, etc. We just think shame is about being self-conscious and feeling that you’re not reaching some standard. And I think as doctors, since a lot of people listening to this are doctors, we have such high, high standards for ourselves. I think that perfectionism is a form of shame, because we want it to be perfect, that’s the standard, and we’re not ever going to get there. So we’re going to shame ourselves if we’re aiming for perfection.

And so I would just say, for maybe all of us, if we could normalize shame. That’s what I wanted to do today, and just say this was an awful experience for me. I don’t actually want to be reliving it, but the only reason I did so with the writing, and I wanted to be on today, was just to say, you know, I think one way the world perceives me is very accomplished, and yet I still feel shame all the time. So it’s just a universal experience, I think. And I think if we’re more honest about it in medicine, we’ll be better doctors, we’ll be better teachers, we’ll be better family members, we’ll be better friends, just everything. And that’s what I would want to leave everyone with.

Kevin Pho: Christine, thank you so much for sharing your story, time, and insight, and thanks again for coming back on the show.

Christine J. Ko: You’re welcome. Thank you for having me.

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