See, Hear, Feel

EP55: Dr. Rebecca Miller on the lived experience of misdiagnosis

March 29, 2023 Professor Christine J Ko, MD/Rebecca Miller, PhD Season 1 Episode 55
See, Hear, Feel
EP55: Dr. Rebecca Miller on the lived experience of misdiagnosis
Show Notes Transcript

Join me in my conversation with Dr. Rebecca Miller who has extensive experience in the healthcare arena, both as a highly trained psychiatrist and as a patient. We touch on a trip to the Pyrenees, parenthood, and cogntive bias as pertaining to the misdiagnosis of early onset Parkinson's disease. Dr. Rebecca Miller, PhD attended Barnard College-Columbia University as an undergraduate, received an MA and PhD at Long Island University in Clinical Psychology, and completed pre- and post-doctoral training at Yale University School of Medicine. She has received the Goldberg Leadership in Education from the American Psychological Association in 2019, and she is currently an Associate Professor Psychiatry as well as the Director of Peer Support and Family Initiatives at the Connecticut Mental Health Center. She is a strong believe in the power of the patient voice and has written on the lived experience with Parkinson’s disease as well as the lived experience of safe disclosure for mental health professionals. She was diagnosed with Parkinson’s at age 39 although first identified symptoms as early as age 26. For more information, visit https://www.rebeccamillerphd.com/. Links to articles on better care in the hospital, parenting with Parkinson's, and the body as public property for commentary.

[00:00:00] Christine Ko: Welcome back to SEE HEAR FEEL. Today I have the honor of speaking with Dr. Rebecca Miller. Dr. Rebecca Miller has a PhD and she attended Barnard College, Columbia University as an undergraduate and received her MA and PhD at Long Island University in Clinical Psychology. She completed pre- and post-doctoral training at Yale University School of Medicine. She has received the Goldberg Leadership in Education Award from the American Psychological Association in 2019. She's currently an Associate Professor of Psychiatry, as well as the Director of Peer Support and Family Initiatives at the Connecticut Mental Health Center. She's a strong believer in the power of the patient voice and has written on that, and I will put a link to one of her articles in the show notes. She has written on the lived experience with young onset Parkinson's disease as well as the lived experience of safe disclosure for mental health professionals, and I'll put a link to an article on that as well in the show notes. She was first diagnosed with Parkinson's at age 39, although she first identified symptoms as early as age 26, and I will put a link to her website, which is rebeccamillerphd.com as well into the show notes.

[00:01:13] Thank you for being here, Becca. 

[00:01:15] Becca Miller: Thanks so much for having me. Such an honor. 

[00:01:17] Christine Ko: Could you share, first off, a personal anecdote about yourself?

[00:01:21] Becca Miller: One that comes to mind is when I was 35, actually, and I was single and thinking about having a child. Ended up traveling to France for six weeks by myself, wandering around, and doing what's called woofing, which is where you help organic farmers on their farms. I was a psychologist already, working, but I decided I really needed to do something different, and this included me traipsing through the Pyrenees, chasing this woman's donkeys that had ran away from her. So on a hill in the Pyrenees, trying to figure out what I'm doing with myself and my life, and doing that on my own and figuring out everything gave me the courage to become a single mother, by choice, which means that I have my daughter on my own with a donor. 

[00:02:03] Christine Ko: That's awesome. Thank you for sharing. That shows a lot of courage, bravery, self-reflection. 

[00:02:10] Becca Miller: Yeah, it was a mix of bravery and ignorance, but it led me to some good places, and I think that's true with my daughter too. You never know what the adventure is gonna be when you become a parent. 

[00:02:19] Christine Ko: I was gonna say that I think for every parent, it's a mixture of some degree of ignorance, because I had no idea what I was getting into. 

[00:02:28] Becca Miller: Yeah, you always say you're gonna have a baby, right? But that baby becomes a toddler. It's a whole journey that keeps changing. I always used to think about being pregnant, and that was the first experience and kind of giving up control over your body in a certain kind of way. The changing nature of your body becomes this kind of public property where people are making comments and wanting to touch your belly, et cetera.

[00:02:48] Christine Ko: When you talked about the body becoming public property for commenting, you've written about that in relation to Parkinson's; as we just touched on, many women who become pregnant can experience the body becoming public property for commentary. Can you expand on that a little bit? 

[00:03:07] Becca Miller: With pregnancy, generally it's this positive. People want to join in with you as you're bringing new life into this world, and the community aspect of your body becomes more emphasized. But I think as a person with a disability, it's been really interesting to see how it's a complicated experience of trying to navigate other people's reactions. 

[00:03:25] I've had the experience where, when I was first honestly experimenting with sharing what was going on with me. I was like, I'll just share it in a very casual way. A colleague who I'd known for a while was like, oh, are you okay? I go, oh, nothing. It's just Parkinson's Disease. And they stopped to look at me and be like, oh my God. So, that was a learning lesson. Also, I had one person say to me, once I told them the news, they were just so overwhelmed by it, unable to respond.

[00:03:51] So there are oftentimes where you feel like you have to step in and rescue people from their own discomfort, et cetera. But then other folks who were just oh, that sucks, a very kind of natural response that I found much easier to deal with.

[00:04:05] Christine Ko: Yes. I appreciate how you contrasted the thought of new life and pregnancy as a sort of universally joyous experience. Oh, I wanna be a part of it. So they wanna touch your belly without even asking or something like that, versus a disease. 

[00:04:22] Becca Miller: Exactly. What was really helpful for me is I was working with a psychiatrist at the time. And he said, because I really struggled with, how do I tell people, when do I tell people, what do I tell people, when after my diagnosis? And he was like, I think that you wanna bring people on as allies as much as you can, to share them with them, this news.

[00:04:40] Bring them onto your team, in a sense of supporting you, finding a way to share with them the news, in a way that is a small bite so that they can digest it, and know it, but not have to feel overly burdened by it.

[00:04:52] Christine Ko: Yeah I understand that. Just even with anything, whether it's illness or a disability or just I'm emotional about something... I don't want someone to ask, and then other times, I really do want someone to ask. It just goes to show how relationships are hard. 

[00:05:08] Becca Miller: Sure, and it's a relationship with your illness, too, that changes and evolves over time. When I was diagnosed, I was really lucky that I went for a second opinion, and the specialist said to me, take charge of your disease. Don't let it take charge of you.

[00:05:21] Christine Ko: I like how you said to make people allies for you and of your disease. I like how you said your relationship with your disease changes as well over time. And the third thing I also really liked is what your doctor said, for you to try to take control of the disease rather than the other way around. That's really good advice. It applies to more than just disease, too, I think. 

[00:05:46] Becca Miller: That's very true. I was also diagnosed with mental illness when I was 19. And that was not the message that I got, when I was diagnosed with that. It was more like, you're gonna have to be on this medication for the rest of your life, so get used to it. And that actually ended up not being true in my particular case. I'm not on any mental health medications at this point.

[00:06:04] Christine Ko: May I ask what mental illness it was? 

[00:06:06] Becca Miller: I was diagnosed with bipolar disorder, but I don't think that was actually an accurate diagnosis. It was in the early mid nineties, and that was the super popular diagnosis at the time. It was very much overdiagnosed actually, especially in adolescents and young adults.

[00:06:23] And there's actually, there's some relationship, but I'm not sure exactly. I don't know that actually anyone knows exactly what it is, but between depression and bipolar disorder and later Parkinson's disease. They're all linked to dopamine in some way. And those have been found to be much more common in people later diagnosed with Parkinson's disease.

[00:06:41] Christine Ko: I know from reading your articles, and what you just shared from when you were 19, that you have a fair amount of experience with diagnosis, but also the flip side, misdiagnosis in healthcare. Can you talk about that a little bit? 

[00:06:55] Becca Miller: I'd really love to see a brief screening instrument that would maybe flag people for further follow up that includes things like loss of sense of smell, reduced arm swing, REM sleep disorder. These are all early indicators of a possible early Parkinson's diagnosis. Oftentimes people will go for years experiencing those kinds of things, one of them or multiple of those symptoms, but won't put it together until much, much later. And especially for women, and younger women, because it's seen as an old man's disease really. And like the classic image of this is a drawing of a hunched over man with a cane.

[00:07:31] But there's so many of us who are younger and it's the second fastest growing neurological disorder in the world after Alzheimer's. Some kind of brief screening instrument would really be helpful potentially in capturing those people.

[00:07:43] Christine Ko: Yeah. And that shows cognitive bias, right? I'm not a neurologist, but the picture in my head, the image that pops up of Parkinson's: it is an older male. That automatically also leads to misdiagnosis of younger individuals, women, who could very well have Parkinson's. 

[00:08:00] Becca Miller: Yeah, there's so many stories of taking five years, 10 years for someone to get an accurate diagnosis, particularly for the younger, and particularly for women. When I was 29, I went in. I had this weird numbness and tingling, and went in, and they ruled out MS. The doctor laughed at me, and so that was another piece where I was like, oh, okay. I guess this is nothing. For me, I never had tremors. If you don't have tremor, and just the rigidity and slowness, that also creates another barrier to diagnosis. 

[00:08:31] During my pregnancy was actually when I first started noticing my symptoms of Parkinson's because I thought that I had carpal tunnel syndrome from pregnancy, which is so common, cause I stopped being able to really type with my right hand. But then when it didn't go away after I gave birth, that's when I started the process of getting diagnosed.

[00:08:47] I was 38 when I gave birth, and then finally when my daughter was nine months old, was diagnosed in July, 2013. There's a great concept that I'm still learning more about called epistemic injustice, the idea of who's believed, and of whose story is believed, particularly in healthcare.

[00:09:06] I remember thinking, when my right foot started dragging just a little bit, very mild. I was like, oh, I must be kind of lazy. It's not as if I ever said that to anyone or articulated it out loud. Cause then I think I might have been like, well, that's ridiculous. But anyway, that's what I felt like with my symptoms. It's like I would make all these tiny little adjustments to accommodate for these symptoms. That later, I came to find out, all wrapped up into this Parkinson's diagnosis.

[00:09:32] Christine Ko: You touched on you would be hard on yourself, and I don't mean that in a negative way. Is some degree because you do have training as a clinical psychologist, and with the training that you'd had, and the lived experience that you'd had, to that point, you're like, why would my foot be dragging? That can't really mean anything, medically, other than that I'm lazy. 

[00:09:51] Becca Miller: That one, I'm just perplexed at myself to be honest. But there's something called psychogenic Parkinsonism, which is caused by psychological reasons. And I thought, well, maybe that's what I have. And I kept my fingers crossed at that point, hoping. If it's, oh, if I'm just being lazy, then if I just have more willpower, then I'll be able to push through it. As opposed to this is some neurological disorder that is degenerative. Those are not the words you wanna hear. I'd much rather hear that I'm lazy.

[00:10:19] Christine Ko: Yes. Something you can fix. Touches on why it's so hard as a patient, or like for me, the mom of a patient, because the bias is to believe the doctor, and the bias is to want to believe that there isn't a major medical issue. And so there's just so much room for misdiagnosis. Do you have any thoughts on how patients and doctors can partner better together?

[00:10:50] Becca Miller: It's a challenge. One is finding the right doctor for you. It took me a while to find a neurologist that I felt really comfortable with. I feel lucky that I live in an urban area where there's more than one neurologist that I can potentially work with. In rural areas, et cetera, there may not be any neurologist, much less a movement disorder specialist, which is the kind of gold standard for Parkinson's. But I think that's one piece. If you can find a doctor that you feel really comfortable with. It's interesting, though, thinking back to a dentist that I had, he was really such a terrible jerk, but I didn't really care because he was really talented in the work that he did. So in that case, I was like, I don't really care. Even his hygienist and everyone who worked with him didn't really like him all that much, but he was very talented. So there's something to be said when the skill is more important and overrides the relationship. 

[00:11:43] Christine Ko: I talk about this with my husband and some of my friends where we're like, I don't care if I like the person, I want them to be able to do a really good job of fixing whatever it is. A dentist who's doing a procedure or say a surgeon just needs to have excellent skill. 

[00:11:59] Becca Miller: I was very lucky because my surgeon was such a great person, and he was really skilled. So that's like a big winner there.

[00:12:04] Christine Ko: My son had surgery. We ended up getting three opinions. The surgeon who did the surgery was great. I really liked him. He was reputed to be one of the best surgeons for that procedure. And I was so happy to like him as well and feel so comfortable with him. That was the experience that really started to change my mind about this. Like, why can't patients always have both? 

[00:12:32] Becca Miller: Yeah, it does, it makes a big difference if you can get both. It's amazing. I felt so lucky that I just so loved my surgeon. 

[00:12:40] Christine Ko: I'm so glad for you. [Yeah.] Do you have any final thoughts? 

[00:12:45] Becca Miller: I'm on a patient advisory board for our local hospital, and the power of lived experience, and using your lived experience as a certain kind of expertise, has been so valuable. I was really angry about an experience I'd had at the hospital. It was really a systems experience, and how do we work to shift those systems to really be more kind of person-centered as opposed to the individual being ground up by that system? 

[00:13:11] Christine Ko: I'm so with you. I enjoy the opportunity to talk about this stuff that I think helps me feel less ground up by this system, both as a doctor and as a patient and as the mom of a patient. The patient's lived experience, plus the doctor's lived experience of seeing other patients and other ways that diseases present and other symptoms, all this could be additive in a really superlative way.

[00:13:36] Becca Miller: It was great talking with you. 

[00:13:38] Christine Ko: Thank you, Becca.