021 On the Other Side of the Diagnosis with Kimberly Stepien MD
On today’s episode, we are joined by Dr. Kimberly Stepien, a medical retina specialist and the director of the Inherited Retinal Disease Clinic at UW Madison. Together, we pull back the curtain on what it is like to sit on the other side of a vision loss diagnosis and how clinicians can deliver difficult news with deep compassion. Dr. Stepien shares her journey of building a holistic, patient-centered clinic that integrates genetic counselors, social workers, and vision rehabilitation to support the whole person. Whether you’re navigating a new diagnosis or seeking a beacon of hope in current clinical trials, this conversation offers invaluable insights into the human side of medicine.
Sitting in the Other Chair: Humanizing the Diagnostic Trauma of Vision Loss
As a psychotherapist and rehabilitation counselor who is legally blind, I have spent years helping individuals navigate the messy, non-linear terrain of disability adjustment. In my practice, I sit opposite brave people who are working through a tidal wave of confusion, isolation, and profound grief. Over time, a heartbreakingly consistent theme has emerged from their stories: the day they received their official vision loss diagnosis was not just difficult—it was actively traumatic.
The narrative usually goes something like this: a doctor looks into their eyes, attaches a clinical, life-altering label like retinitis pigmentosa or Stargardt disease to their experience, lists off the functional visual terrain they are bound to lose, and ushers them out the door into a 15-minute checkout lane. In that singular moment, a person’s world is shattered, and they are left entirely un-resourced and unsupported to pick up the pieces.
It is incredibly easy to cast the physician as the unfeeling villain in these stories. But as a clinician myself, I know that trauma is rarely born out of simple cruelty; it happens within us when we face immense threats without adequate support. I wanted to pull back the curtain and understand the mechanics of this disconnect from the other side of the desk. That desire led me to sit down with Dr. Kimberly Stepien, a leading medical retina specialist and director of the Inherited Retinal Disease (IRD) Clinic at UW Madison. What resulted was a beautifully transparent and deeply moving conversation that humanized the immense pressures weighing on both doctors and patients.
The Blueprint of a Holistic Clinic
From the beginning of our chat, it was obvious that Dr. Stepien possesses the precise blend of technical brilliance and deep empathy that our community so desperately needs. Early in her career as a junior faculty member, she noticed a glaring flaw in how medical clinics operate. She was handed complex, life-altering cases and given a standard 15-minute time slot to manage them.
Recognizing that this was a disservice to the human beings sitting in her exam chairs, she fought tooth and nail against institutional norms to build an entirely different model. At UW Madison, Dr. Stepien designed an IRD clinic centered around extended appointment times and built on an infrastructure of wrap-around care. When a patient enters her clinic, they aren't just getting an ophthalmic evaluation; they have immediate, on-site access to integrated genetic counselors to help map out their family's health trajectory.
But Dr. Stepien didn’t stop there. She recognized that a patient's primary struggles occur outside the laboratory walls, in the complex routines of daily life. By integrating low-vision occupational therapists and vision rehabilitation providers, her team gives patients immediate, practical survival tools to navigate their environments safely. Perhaps most profoundly, she integrated a dedicated social worker with advanced training in grief counseling directly into her clinic workflow.
Hearing Dr. Stepien recount a moment where her social worker asked a newly diagnosed patient, "How are you doing?" only for the patient to honestly respond, "After such a catastrophic diagnosis, not so good," sent a chill down my spine. There is immense therapeutic beauty in that raw honesty. By handing that patient off to a social worker right then and there, Dr. Stepien bridged the dangerous chasm between physiological diagnosis and psychological survival.
Navigating the Exam Room Grief Loop
One of the most illuminating aspects of our conversation was hearing Dr. Stepien speak openly about the emotional weight she carries as the bearer of permanent bad news. "I both love my days where I have IRD clinic, and I am exhausted and worn out after," she admitted candidly.
As eye care professionals, physicians are trained fundamentally to be diagnosticians. They are taught to identify a structural problem, give it a name, and treat it as a medical victory. They are rarely given extensive formal training to hold space for the psychological devastation that follows. When Dr. Stepien walks into an exam room, she isn't just looking at a degenerating retina; she is actively engaging with the classic stages of grief.
She described seeing profound shock, where a patient is so entirely overwhelmed they cannot comprehend a single word of medical data. She encounters deep denial, where a patient insists their eyesight is flawless despite objective clinical testing to the contrary. And very frequently, she encounters intense anger and frustration directed straight at her.
From a neurological standpoint, this makes complete sense. When a human being is told their body is betraying them and their independence is threatened, the survival centers of the brain take over, shutting down the cerebral capacity for logic and language. Anger is an easily accessible, secondary defensive emotion that covers up a well of terrifying vulnerability. It takes an extraordinary amount of personal maturity and mental practice for a doctor to look past that hostility, realize it isn't personal, and respond with grounded empathy rather than professional defensiveness.
Nowhere does this grief loop spin faster than during conversations about driving cessation. Dr. Stepien shared that her clinic is frequently filled with tears because it falls upon her to tell patients they can no longer safely operate a motor vehicle. It is an agonizing, life-altering threshold that represents a massive loss of autonomy. Yet, she steps into that uncomfortable, powerful role with courage because she understands the real-world consequences of silence.
Striking the Delicate Balance of Hope
How do we survive today’s heavy realities without collapsing into despair? The answer lies in threading a incredibly delicate needle between authentic grief and radical hope.
Dr. Stepien is a fierce advocate for genetic testing, emphasizing that we are currently living in the most hopeful era in the history of ophthalmic medicine. She serves as the principal investigator on nine concurrent clinical trials, exploring neuroprotective therapies, gene therapies, and cutting-edge stem cell regenerative trials. For the first time, clinical trials are yielding real results, and therapies are coming down the pipeline that can genuinely alter the course of these conditions. Knowing that science is actively marching forward provides a crucial beacon of light for patients standing in the dark.
However, as a psychotherapist, I must highlight a vital truth that came up in our dialogue: hope can sometimes be used as a means for denying ourselves the important process of grief. A therapeutic breakthrough five years down the road does not solve the fact that a patient is struggling to navigate their kitchen safely today, or that they are mourning the loss of their driving license this morning. We must hold both realities simultaneously. We must allow ourselves to grieve today's losses completely while keeping our eyes firmly fixed on tomorrow's possibilities.
Moving Forward with Grace
If there is a core message I want you to take away from my time with Dr. Stepien, it is the vital importance of extending grace—to yourself, to the journey, and even to your medical providers. Doctors are fully human, operating within an imperfect, revenue-driven systemic machine that frequently starves them of the time and resources needed to provide holistic care.
If you have experienced a cold, clinical, or dismissive diagnosis day, please know that your pain and frustration are incredibly valid. You were treated as a collection of physiological parts rather than a whole human being. But you do not have to settle for that experience. As Dr. Stepien beautifully reminded us, you are not stuck with the first doctor you meet. You have the right to seek out a medical team that values your humanity, honors your emotional reality, and collaborates with your journey.
Vision loss alters the path to your goals, but it does not erase the destination. There are vibrant peer communities, dedicated low-vision specialists, and exceptional mental health resources waiting to lighten the load on your shoulders. Lean into your community, protect your mental health, and remember that even when the visual landscape changes, life remains a profoundly beautiful thing to experience.
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Receiving a diagnosis of an inherited retinal disease (IRD) like retinitis pigmentosa or Stargardt disease can be a profoundly traumatic experience. Too often, the fast-paced nature of modern medicine leaves patients feeling rushed, misunderstood, and entirely un-resourced on one of the most difficult days of their lives. In this episode, host Matthew Reeves sits down with Dr. Kimberly Stepien, a leading medical retina specialist and director of the Inherited Retinal Disease Clinic at UW Health at UW Madison, to discuss what it takes to bring humanity, grace, and holistic care into the exam room.
Dr. Stepien opens up about her personal career journey and the distinct shift that occurred when she realized a standard 15-minute appointment slot was entirely inadequate for patients processing life-altering visual impairments. She shares how she fought institutional pressures to design an innovative clinic model that prioritizes extended appointment times and immediately surrounds patients with genetic counselors, low-vision occupational therapists, and dedicated social workers trained in grief counseling. We also explore the intricate emotional tightrope clinicians must walk when delivering difficult news, navigating stages of grief like denial and anger, and addressing the heavy realities of driving cessation.
Beyond the clinical mechanics, this episode offers a massive dose of tangible hope. Dr. Stepien highlights the cutting-edge therapeutic breakthroughs happening right now, including gene therapies, neuroprotective treatments, and pioneering stem cell clinical trials. More than anything, this conversation is a gentle reminder that you are a whole human being, not just a set of eyes. If you have struggled to find a collaborative, empathetic connection with your care team, this episode will empower you to keep advocating for yourself, seek out peer communities, and recognize that a fulfilling life remains entirely within reach.
Topics Covered: inherited retinal disease, retinitis pigmentosa, Stargardt disease, diagnostic trauma, medical empathy, genetic testing for vision loss, vision rehabilitation, low vision occupational therapy, grief in disability adjustment, driving cessation, clinical trials for blindness, stem cell therapy, patient advocacy, mental health in vision loss, overcoming isolation.
ABOUT THE PODCAST
inSight Out is your podcast home for living well with vision loss. Host Matthew Reeves (LPC CRC NCC) is a legally-blind psychotherapist and rehabilitation counselor specializing in helping people thrive while living with disability. Matthew is licensed in Georgia and is a nationally certified rehabilitation counselor.
Please be sure to subscribe to catch every episode. And remember to share the show with others in the blind and low-vision community!
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©Integral Mental Health Services, LLC
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The following transcript is AI generated and likely contains errors.
021 On the Other Side of the Diagnosis with Kimberly Stepien MD
COLD OPEN
[00:00:00]
Dr. Kimberly Stepien: You know, it's something that you just have to kinda learn how to do. And, um, I think you know, -- we've all been-- I've been-- a patient for different things, right? And I remember feeling that vulnerability and wanting explanations. So I always tell my, my trainees, you know, "Imagine if you were in these shoes, you know, how would you feel? What would you want, you know, someone to, to do or to say, or to help you with in, in this situation?" At least it frames a kind of a state of mind when patient or when, you know, when other-- when my trainees are walking into an exam room.
INTRO
Matthew Reeves: You're listening to Insight Out a podcast about living well [00:01:00] with low vision. Maybe you're feeling confused, scared, isolated, or disheartened about a recent vision loss diagnosis, or maybe you've been managing your vision loss for a while and now you want to hear from others about how to continue growing and thriving. Insight Out is your supportive space to find healthy and impactful tools to build and maintain a truly rich and gratifying life with low or no vision.
I'm Matthew Reeves. I'm a legally blind psychotherapist and rehabilitation counselor. I specialize in helping people adjust to disability through my practice, integral Mental Health Services in Atlanta, Georgia. I'm really glad you're listening.
Please subscribe so you don't miss an episode, and let others in the low vision community know about the podcast so the word can spread to those who might find it helpful. And now on with today's discussion.
TOPIC INTRO
Matthew Reeves: on today's episode, we're joined by Dr. Kimberly Stepien, a medical [00:02:00] retina specialist and the director of the Inherited Retinal Disease Clinic at UW Madison. Together, we pull back the curtain on what it's like to sit on the other side of the vision loss diagnosis and how clinicians can deliver difficult news with deep compassion.
Dr. Stepien shares her journey of building a holistic, patient-centered clinic that integrates genetic counselors, social workers, and vision rehabilitation to support the whole person. Whether you're navigating a new diagnosis or seeking a beacon of hope in current clinical trials, this conversation offers invaluable insights into the human side of medicine.
INTERVIEW
Matthew Reeves: I am happy to, uh, welcome Dr. Kimberly Stepien to the podcast today. Thank you for being here. I have wanted to talk to an ophthalmologist who specializes in inherited retinal conditions for a long time, uh, and I'll explain [00:03:00] that in a minute. But before we do, can you introduce yourself to the audience and let us know kinda your background and what you do for a living?
Dr. Kimberly Stepien: Sure. Um, so my name is Kimberly Stepien. I am, uh, trained as a medical retina specialist, but I have a subspecialty interest in inherited retinal diseases, and I run our inherited retinal disease clinic here at UW Madison through UW Health, uh, uh, to take care of patients with inherited disease. my background, I'm in Wisconsin, so I am the product of two educators, which, uh, was a great place to be, and they are both products of fam- farm families, so a lot about family and, um, taking care of people.
I, um, the first of our, uh, family to go to medical school. Um, I always liked science, uh, and things like that, and, uh, in undergrad, you know, just never found anything other than medicine that really called to me, so I [00:04:00] went to medical school. Um, when I first went there, I thought that I was going to save the world and do kind of primary care or women's health, and then I realized I'm very anal retentive and need to know everything about, um, everything.
So it's much easier to kind of focus on, um, a certain part of the eye or a certain part of the body like the eyeball, which is absolutely fascinating and amazing. Um, the first time I looked into an eye, it was like looking at a, a different landscape. Um, and you know, you probably have heard the cliché, the eyes are windows into the soul, and I...
You know, they're definitely windows into the body, so it's just a fascinating organ to work with and be part of. Um, so I went into ophthalmology after finding some great mentors and, uh, did training first in basic ophthalmology and then in retina, which is the best part of the eye, in my opinion, because it's the part of the eye that does the seeing. Um, but it's also the part of the eye that has, um, the most, uh, you know, [00:05:00] pathological changes that really can affect vision in a very permanent way. so different diseases like diabetes, macular degeneration, um, other inflammatory conditions, but then also inherited retinal diseases. Um, my fellowship, I, I did my fellowship down at Bascom Palmer in Miami, Florida. And during my fellowship, I was exposed to, uh, you know, a lot of patients with inherited diseases and got to spend some time with a great mentor, Byron Lamb, who is, uh, their IRDs expert down in Miami. so that was very eye-opening to me. When I took my first position, which was in Milwaukee, Wisconsin, at Medical College of Wisconsin and Froedtert Hospital, um, I was, uh, brought in as a medical retina specialist and, um, was by far the most junior person on the faculty.
Um, the rest of the retina service had been there for a while. As a result, I got to see a lot of the new patients, including a lot of patients with inherited, uh, retinal [00:06:00] diseases such as retinitis pigmentosa, Stargardt disease, um, you know, other more, uh, unusual ones like choroideremia and things like that. and it was very clear in the way our medical clinics are set up with, you know, fifteen minutes to spend with each patient, that it was not an adequate, um, amount of time, um, for this type of patient because there are so many things that really should be discussed and talked about, and it shouldn't be a rushed thing.
So, uh, eventually, um, my-- I evolved into a, an, a clinic, within a clinic, if you will, uh, called an inherited retinal disease clinic where I had longer appointment times. And, um, initially it was just me and thirty minutes a time, which, you know, I did my best. Um, but this clinic has, um, started to evolve, and, uh, during this whole process, I, um, you know, got involved in a lot of other research.
I do a lot of [00:07:00] imaging research also. Uh, so we're-- I was able to look down, um, in a cellular resolution using a technology called adaptive optics, um, to look into the retinas of these patients with, uh, uh, inherited retinal diseases such as, let's see, achromatopsia or, um- look at a lot of Stargardt patients, a lot of RP patients, and, you know, we f- see things and we're finding things that had never been seen before, and that was
Matthew Reeves: Wow! Wow.
Dr. Kimberly Stepien: very fascinating. I think the, the... I, if I had, um, one of thing to, that really pushed me into this career though, it was actually, um, patients. Um, I, I, don't have any family members with an inherited retinal disease. Um, but I was seeing-- I was at my satellite office and I saw, um, two patients. One was a younger, uh, boy, and then the other was his mother, and they were referred in by opposite, you know, other doctors, not the same [00:08:00] doctor. I, um, looked into the son's, uh, eyes first and said, "Gosh, I think this is choroideremia." Um, and then I looked into his mom's eyes and I, she looked very similar to her son, which, um, m- I'm sure m- many of you don't know this, but choroideremia is X-linked, meaning that mothers should not have the disease, only the sons should.
It's usually seen mostly in boys. But, um, carriers can be affected. And, um, kind of working through the process of diagnosing tho- that patient, um, at that time, genetic testing wasn't really available, so figuring out how to do that and then to get the, um, you know, the, the, the care this kiddo needed, um, was just really a fulfilling thing and, um, again, just kind of exemplified how important the, the doctor can be in these roles, and also that we just need more time. Um, so after about nine years in Milwaukee, I [00:09:00] was recruited over to UW Madison, um, to start their inherited retinal disease clinic. Um, UW Madison is a much more, I would, in my opinion, academic, uh, institution with really great researchers who are doing absolutely fascinating things like developing stem cell therapies for the eyes or gene therapies for the eyes and doing some amazing research.
Um, UW is home to what we call the Wisconsin Reading Center, which is the, um, which is a, um, center that takes in all the clinical photos from clinical trials and, um, and, um, looks at them so that they can be used for, for, um, you know, clinical data in a non-biased way. So we are kind of one-- at the forefront of that technology here at UW. So there's just so much more that UW could offer, um, me, and even though there were these amazing researchers doing all this stuff in the field of inherited retinal diseases, they did [00:10:00] not have a, kind of a, a point person on the clinical side to be seeing these patients. They were just kind of distributed throughout, um, the retina faculty for the most part. So, um, having been in this field for a little while, I kinda knew what I wanted out of my IRD clinic, which was longer appointment times, very clear that when we have a patient come in, inherited disease, it's very helpful to offer them the opportunity for genetic testing. So I wanted to have genetic counselors integrated into my clinic, which I do.
I have two of them, and they're fabulous, um, so that we could do testing right there that day when they first present. Um, uh, we can get into that more if you want, why I think
Matthew Reeves: Yeah
Dr. Kimberly Stepien: But, uh, it, it, it's great to have that. And, uh, the clinic has continued to evolve. Um, I have a wonderful colleague who does vision rehab, and, you know, she started this program at our [00:11:00] institution, and it has evolved into three other pr- uh, two other providers, so a total of three. we've worked to get a low vision occupational therapist now as part of our team, um, so I can refer patients to them to kinda help with activities of daily living, which are much harder with reduced vision. most recently, I have been able to also integrate a social worker into my clinic, which has been literally game-changing. you know, it's one thing to diagnose a patient, but it's another thing to get them pointed to the right resources that can have a much more, um, uh, profound effect on a person's life than me telling them what their disease is called and what it's caused by. Um, so it's been an evolution, but I'm super proud of what we've developed here the other thing I also do, as I mentioned, I'm interested in research.
So I do a lot of research, um, both in ocular imaging but also in the field of IRDs. So currently, I'm [00:12:00] principal investigator on, I think it's nine clinical trials for IRDs. Um, we, um-- So some of them are like natural history studies just so we can learn more about these diseases. Um, one that is about to kick off is, um, to collaborate with some friends that, um, to do more gene discovery. So in, in those patients that we get genetic testing results that are inconclusive or negative who clearly have an IRD, we can look further into their genome and see if we can figure out the cause. Um,
Matthew Reeves: Right.
Dr. Kimberly Stepien: we also, um, do therapeutic trials. We have some neuroprotective therapies for retinitis pigmentosa that we're part of currently, and I'm really excited and proud to say that just last, um, month, we dosed our first patient, um, with a stem cell therapy.
So we're looking at, um, stem cell, uh, re- you know, neuroregenerative therapies for, um, retinitis pigmentosa, which we hope will evolve to other IRDs in the future. So a lot going [00:13:00] on. Um, we're a part of actually a Stargardt trial too, and let's see, what else do we have going on? Um, we are part of the Foundation Fighting Blindness, uh, UniRARE trial, which is a fabulous study. you know, we think of retinitis pigmentosa and Stargardt being very rare, but believe it or not, there are diseases that are even much more rare, and they really don't get the attention they need. So the UniRARE, um, study is fascinating in that we are able to collect data on those very ultra-rare diseases that really don't get attention otherwise.
Um, so it's very good to be, and very fun to be part of that trial too.
Matthew Reeves: Yeah. That
Dr. Kimberly Stepien: there. Do you have some questions for me about all that?
Matthew Reeves: I am, I'm thinking nine, primary investigator on nine clinical trials, so you have lots of spare time. Uh, that's, so I'm really grateful for you making time to be here today. You've got a, an incredible career, uh, that's, uh, led you to this place, and I think it makes you the perfect person to talk [00:14:00] about, uh, the thing that, that I really wanted to spend a little time on today.
And, and my interest in this comes from working with my own clients and my own experience, uh, that's pretty emotional and pretty personal. Uh, and, and that is that I have heard this story from so many people that their, their diagnostic day, like the day that a doctor hands them a diagnosis, can be incredibly traumatic, uh, and just profoundly difficult.
And what, and what, what I've come to appreciate as a clinician myself is that trauma is not what happens to you, it's what happens within you, and largely that is, uh, the result of how supported you feel, how resourced you feel when you face something difficult. And the story I hear over and over again is how unsupported, uh, people are feeling when, on the day of their diagnosis.
And, you know, [00:15:00] I believe in my bones that almost no one is just uncaring. Uh, it, it... That, that's not... I don't think that can answer why that story of diagnostic trauma is so common. Uh, it's the easy thing to point at and say, "Oh, the doctor doesn't just, the doctor doesn't give a damn. The doctor didn't spend any time with me, and the doctor's the villain in this story," and I just can't believe that's actually true.
Uh, and your story is one that kind of bears that out. You went out of your way to develop a clinic that tries to address some of these problems. But it makes you a really good person to speak to what it's like being on the other side of that diagnosis, to be the one who's giving the bad news, uh, and wanting to do it in the most compassionate way possible.
Can you talk about maybe, uh, you know, when you s- you said you were a junior member of the faculty and you were seeing a lot of these new patients for the first time. I imagine giving that diagnosis was something you've done a lot at a, at the entire spectrum [00:16:00] of your career, from very early and with less experience than that to now.
Can you talk about what it's like to give the diagnosis?
Dr. Kimberly Stepien: It's very hard. Um, you know, I, I both love my days where I have IRD clinic, and I am exhausted and worn out after my days of IRD clinic, um, because I do know that the news I'm delivering is going to be very for these individuals. Um, you know, I can think of several people this week where we went through this. Um just kind of back up a little bit, you know, uh, as physicians, we are diagnosticians. Um, so we, um, our goal is to kinda give a diagnosis. And, um, you know, it's one thing to look into an eye and say, "This patient has Stargardt disease," or, "This patient has retinitis pigmentosa." And, you know, for a lot of physicians, that's, that's the win.
You know, we, we see a problem, we can call it a name, [00:17:00] um, we've done our job. Um, it's very clear that, you know, we need other support though for individuals with these diseases. It's, it, you know, there's really good evidence out there that when you vision, it's a- akin to having, like, a cancer diagnosis or much even worse things than that, in fact, sometimes worse than that. so that is why my clinic has evolved, but, you know, those first few patients that I was seeing, know, I could tell them the name of their disease, but even at that point, I couldn't get them genetic testing, and, um, I couldn't-- really... We had low vision, but it was okay, and it was mostly for people who had macular degeneration or other eye diseases, which were very different from my population, which are still, you know, younger and still working and doing thing, you know, raising families, um, just trying to navigate their communities.
They're not, uh, a more mature person. [00:18:00] it, it, it's hard. It's really hard. Um, so first of all, there's a huge time constraint. You know, doctors are super busy. Um- other thing is most of us are trained in diagnoses. They're not-- we're not trained in, um, kinda going through those emotional steps that y-you know, one would hope you could present to a patient when you're telling them these hor-- or not horrible, but these life-altering, um, diagnoses. Um, it was so funny, earlier this week, one of my patients said, "Are you a therapist too? 'Cause you sound like a therapist." Like because we kinda have to evolve those, not e-- you know, you have to be empathetic. You have to understand where the patient is at when you're presenting these, um, th-these, this information.
And it's, it's very interesting. Um, you know, every time I walk into a room, I'm always thinking about, um, grief, actually. Um, you know, there's different stages of grief. [00:19:00] There's denial, which I see all the time. I have a patient come in, I tell them they have an eye disease, and they're like, "I don't have any problems with my vision.
What are you talking about?" I see frustration and anger. They're very mad, including at me, for telling them that they have something that's going to alter their life. Um, there's pure shock sometimes. They just-- It's clear that I'm telling them something, and they are just so overwhelmed, they can't even comprehend the, what I'm telling them. Um, and, uh, you know, there's, there's a lot of anger too. So, you know, as a clinician, that's a lot to, to deal with patient after patient after patient. Um, uh, I, have learned to be very empathetic and, uh, you know, realize I need to kinda meet the person where they're at and things like that, but also realize when a person is really mad and angry and frustrated, they're not frustrated at me, they're frustrated at the, the, the [00:20:00] disease, and I need to kinda let that, um, be and help them. So, you know, one of the things I do in every clinic is kinda go over, first of all, their disease and their genetic testing. Um, and I do recommend and offer genetic testing to anyone with a suspected IRD, and there's many reasons to do this. Um, one is that, um, there are m-- it's a very hopeful time in this, in this field.
Um, there are so many clinical trials going on right now. Um, but one of the main inclusion/exclusion criteria for many of these trials is the genetic basis of the eye disease. So we sorta need to know that information to understand if a person or a patient could be a p-possible participant in In a clinical trial. Um, I also think it's important to have the option to understand their family a little better. Um, you know, and some pa- family members don't want to know, [00:21:00] um, that, you know, for instance, if we have a patient with autosomal dominant RP. Had a patient today, um, they have three children. Do, do we tell the kids?
Do we test the kids and, you know, they potentially have an a-- life-altering disease heading their way, too. Like, how do we approach that? How do we talk about that? so, the, the-- it makes sense to kinda understand that risk. Or, you know, maybe we do testing and realize their children are not at risk, and, you know, how-- what a relief that is for those individuals to kinda hear that news and not have to have that burden sitting on their shoulders that, you know, they may have passed something to their children.
So, I'm a big proponent of genetic testing, and genetic testing is getting much better. Um, about sixty to eighty percent of the time, we do find the diagnoses. Um, I am-- it's horrible, but, uh, for our minority populations, it-- the rate is much less. You know, that is something that our community, uh, is working on.
[00:22:00] Um, we have many more international sites in our clinical trials now to kinda get a more diverse breadth of genetic information about people so that we can be better in our diagnoses.
Matthew Reeves: Right.
Dr. Kimberly Stepien: too much. What other questions do you have?
Matthew Reeves: Well, I'll, I'll, I'll follow up on a couple of things you said. One is, uh, I'll, I'll refer people if they're interested in the genetic testing side of things. We do have an earlier episode with, uh, a panel of three genetic counselors, uh, and that was a, a really illuminating conversation. I'm, I'm so happy we were able to offer this community.
So if you, if, if somebody's listening and they're, and they want to learn more about that, I would refer them to that. Uh, and then I also think it's really important to highlight something else you talked about, and that it... from the mental health side of things and the neurology side of things. When people receive this diagnosis, you talked about the variety of reactions that you see.
Um, and I wanna talk about anger in a moment, but [00:23:00] first I wanna talk about how, how you... It, it's this really challenging position I think you're describing for you, where you're trying to engage with people at a, at a pretty cerebral level. You're trying to describe a pretty complicated thing, uh, and you're talking about the now, and you're talking about the future, and you're talking about families, and you're talking about...
Like, there's a lot going on there beyond the medicine, and that is precisely the moment when the neurology is gonna make that conversation next to impossible because they are receiving something that's extremely threatening. They're learning about something where their own body is, is kind of betraying them in a certain way, and that's gonna shut down the very part of the brain that allows for that communication.
So I can understand how, uh, you know, I think it's pretty normal for people to kind of f- be feeling all these incredible emotions that aren't processed quickly, and as humans- I see this every day in my [00:24:00] practice. Like, it is such a normal process for that to kind of transform into anger because it's a secondary emotion that we have easy access to as humans.
We're, like, really good at anger. So, so we, we tend to, to...
Dr. Kimberly Stepien: Mm-hmm.
Matthew Reeves: Yeah. Yeah. Uh, and then that makes it even hard. It may-- I mean, a 15-minute appointment isn't, is ridiculous, and a 30-minute appointment is maybe only marginally better because it just takes some time to be able to get to a place where you can even use language to describe or to hear or to speak what you're saying.
Is, has th- is this lining up with your experience?
Dr. Kimberly Stepien: Yeah. Yeah. And again, that is why my clinic has evolved to have, like, a social worker, uh, in it. Um, I was just debriefing with my
Matthew Reeves: That
Dr. Kimberly Stepien: brand new diagnosis. She had no idea that she had RP and that her vision was as affected as it was. so we had talked through everything, but then she had connected with my social worker [00:25:00] shortly after. And worker is great. She also has grief training, which helps so much. Um, so she, she asked, you know, "How are you doing?" And she's like, "After such a catastrophic diagnosis, not so good." And, you know, there's beauty in that honesty, and the fact that we have, um, a person, another person other than just me who she can connect with and kind of start to process some of these things is just invaluable.
And I, I don't have the bandwidth or probably even the training to do it as professionally as other people do. So, yeah.
Matthew Reeves: must be a difficult chair to be sitting in, uh, when it, you're not equipped for it time-wise, training-wise. Uh, it's also not about the career you chose.
Dr. Kimberly Stepien: it--
Matthew Reeves: It's not, it's not the role you picked.
Dr. Kimberly Stepien: that...
Matthew Reeves: And yet people are, people are looking to you saying, "All right, what's next? How do you help me? Help me, doctor."
Dr. Kimberly Stepien: You know, most of us, I think, who do inherited [00:26:00] retinal disease are, are more subspecialists in this, um, do have a lot of these qualities where we, we are empathetic and doing everything we can to kind of fight and advocate for our patients, which, um, makes us unique from, you know, uh, again, the
Matthew Reeves: Hmm.
Dr. Kimberly Stepien: slot kind of situation.
I think we've-- all of us have-- not all of us, I'm speaking for myself, um, I've realized that's just not adequate. Um, the other thing I just wanna mention too is I usually go over a few other things during my appointment, um, you know, uh, research that's going on. A little hope goes a long way, and there's a
Matthew Reeves: Yeah.
Dr. Kimberly Stepien: to be hopeful, and that, that is just a beacon that can really take people, um, to a much better place understanding that I have what I have, but things are changing, and there may be treatment coming down the road, which is really exciting. again, I always offer vision rehab and, um, social [00:27:00] work, um, options if, if they haven't already had that. I offer genetic testing. The other thing I also talk a lot about is driving. Um, there's a lot of crying in my clinic because, um, I-- job is to tell people they shouldn't be driving, which is again, life-altering in addition to having, uh, you know, this diagnosis, but now also learning they can't or shouldn't be driving. But someone needs to do it. It's very clear from the referrals I get to me that it's very clear this person has visual impairment to a level where they shouldn't be driving, but no one, of the doctors that have seen them before them have taken that step to a-tell that person that they shouldn't be driving. Um, I think this is really-- it hit home. I, um, saw a patient, uh, who was driving right acro-across, you know, right around her, um, corner from her house on a very sunny day, um, missed a child, killed the child, and just, you know, devastating for this person to have to live with that, [00:28:00] they should have been counseled earlier that they should not have been driving.
So I, I always bring that up when I'm talking to patients too. So there's a-- it's, it's a
Matthew Reeves: Yeah.
Dr. Kimberly Stepien: There's a lot of crying, a lot of emotion, um, but I think it's a lot of good work, and I'm just always so in awe how my patients learn to adapt to their vision changes and their unique situations. Um, I'm-- it's, it's, it's very, um, motivating to keep going.
Um, yeah,
Matthew Reeves: It's, it seems like that y- you know, your whole career is basically centered on bad news. I mean, like people-- Y- you're not seeing people with... Yeah, it's hopeful.
Dr. Kimberly Stepien: We have our first
Matthew Reeves: you mean?
Dr. Kimberly Stepien: treatment that was FDA
Matthew Reeves: Yeah. Yeah.
Dr. Kimberly Stepien: Um, and there are phase III clinical trials that, um, you know, it's very hopeful that even the next year or so, we may have a, you know, a therapeutic [00:29:00] intervention for RP. Like, and there's a gene therapy going on for, like, Stargardt and for X-linked retinoschisis.
There's so many really reasons to be hopeful. Um, I also know these patients need support, and my, probably my most important job is to make sure that they are connected to those resources because that's, that's really what helps them in their day-to-day,
Matthew Reeves: Yeah.
Dr. Kimberly Stepien: um, activities, so...
Matthew Reeves: Yeah. I appreciate that as the director of a clinic that does what you do, you're seeing it From a perspective that's more than just the medicine, uh, and 'cause, 'cause we're, we're all full humans. Uh, and, and you're right, it is a hopeful time. There is a l- so much going on. I feel
Dr. Kimberly Stepien: we
Matthew Reeves: pretty... I mean, that's one of the...
I feel like I like, I, I enjoy learning about that sort of thing, so I'm fairly plugged into the Foundation Fighting Blindness's efforts and all of that. So I s- and you're right, there's so much that's happening. [00:30:00] It's very active right now.
Uh, and, and results are coming down the pipe, uh, in a way that they never have before.
Um, that being said, I also see as a clinician, to kind of the last point you made, that,
uh, the, that while hope is a wonderful thing to have, uh, it, it doesn't solve today's problem.
Dr. Kimberly Stepien: I,
Matthew Reeves: Uh, and a lot of today's problem is grief. Uh, and it's, it, there's a need to have hope, and there's also a need to not use hope as a form of denial of, of dealing with the problems we have today.
Dr. Kimberly Stepien: I'm giving these
Matthew Reeves: Yeah.
Dr. Kimberly Stepien: that, um, it, it's a different world than 20 years ago when people walk into a clinic and say, "I'm sorry, there's nothing we can do for you," 'cause that is no longer the case. Um, the, the field is evolving. I also wanna throw out there that You know, even [00:31:00] having a devastating diagnosis like retinitis pigmentosa or whatever, um, being told that sometimes having these vision changes and never getting a clear answer or understanding as to why these are occurring to you is very hard on people too.
So sometimes just actually having a name to their, you know, their experience is very helpful too. And there are some great, very supportive communities. Um, I think Chro-Chroderemia Foundation wins in my book. They are amazing. They run marathons to raise money, and they do all this crazy stuff.
Um, their, their team is just really active and, you know, there's so many other small, um, support groups for different people and stuff like that where they, they can find their community. Um, necessarily find their community, but find people who can understand what they're going through. Um, one of my patients here in the Madison [00:32:00] area has, um, pretty severe, um, Usher-related retinitis pigmentosa, she's a go-getter.
That-- There's nothing that she-- will slow her down. But she has created a kind of a social group for people with visual impairment. So they will meet for dinner, and they will talk about anything and everything they want to. And it, um, you know, isolation is a huge thing when you're losing your vision. It's, it's scary to go outside 'cause you're vulnerable um, you don't know, uh, you know, if you're gonna be taken advantage of.
You, you're not sure if you can navigate where you need to go. Um, I've heard that story so many times. to have a, um, option where you can connect with people who are going through that similar experience, um, h- has just been invaluable for some of my patients. I've seen, you know, significant changes in their moods and their emotional states from just connecting with other people. So there's a lot... Uh, like you s-- I don't find it a terrible clinic. [00:33:00] I, I feel like I'm helping people in ways that they really need help, and I'm, like I said, I'm just very proud of where our clinic has evolved to because I think it really does change lives, even though right now we don't have any therapies that we can give very consistently to people, um, to make their eye disease go away.
Matthew Reeves: Yeah, I wish more clinics were structured like you're describing your clinic as being structured. And, and to that point, I'm curious if you could talk about, um, the wider world of ophthalmology and IRDs, IRD clinics, uh, it It sounds like your clinic is more the exception than the rule in terms of how it's structured and how it's staffed and how it's resourced.
Are doctors who end up in this field given any training? Or, like, what is, what is the background in offering diagnosis and having the empathy and connecting at the human level? What, what can be the expectation of a [00:34:00] doctor sitting in that chair?
Dr. Kimberly Stepien: Yeah. you know, as we go through our medical training, we definitely have You know, training in how to deliver bad news and how to try to connect with patients and, um... But at the end of the day, I think it is more personal than we, we'd like it to be. You can train it to some people, but there are just some, some clinicians that just don't connect with their patients, have no desire to connect with their patients.
They want to fix the problem and get out of the room. And if they can do that with saying two words, so be it. Um, I, I think it, it takes a unique personality. And, I, um, clinics, you know, I, I know several of my colleagues, um, have evolved their clinics to, um, be more supportive of the patient who has an IRD. Um, I'm very privileged to have the support people in my clinic with me. But for instance, my [00:35:00] genetic counselors, uh, are covered by our department. They are not covered by our institution. had to fight tooth and nail to have them be part of my clinic and get them into my clinic, and I, I still fight, um, to get, keep the funding that allows me to have them in there.
Um, same with social work. That's-- It's hard. Um, it's not revenue-generating, which is, uh, a kind of a emphasis of a lot of institutions. Uh, you ... If you're not making money doing it, then you shouldn't be doing it 'cause to pay the bills and keep the lights on. And, um, you know, medicine is, is kind of a weird spot right now with, uh, the current administration, um, changing the way a lot of funding's going, both on the research side, but also on the Medicare and Medicaid side of things. Um, so there is really a push to kinda keep our institutions alive and well, and that means being more revenue-based, um, which is not what this clinic needs, right? We need time. We need [00:36:00] s- re- um, support the care that we wanna do. Uh, so there's a lot of different pressures and pulls and things, but, um, I think, you know, there's a bunch of us out there really fighting the fight.
And, um, You know, the beauty of being in an academic center is that I get to train a lot of trainees, everything from medical students to fellows to residents. Uh, so I have had, um, other doctors who are interested in IRD coming to my clinic and shadow me in that clinic so they can see how I run it. um, we can continue to push the world into a better place, uh, so that people get the care and the need they n- you know, the emotional support they need when they do get these kinda diagnoses.
Um, I- I'm hoping the world is a better place than it was even 20 years ago because I think it's evolved a lot.
Matthew Reeves: Yeah. Can you talk more about, uh, the training you do in your clinic for young clinicians and, and [00:37:00] what, what you try to communicate and how you communicate it? I think pulling the curtain back on that sounds pretty interesting and maybe even pretty useful for us to hear.
Dr. Kimberly Stepien: Yeah, I, um, I have, uh, medical students, so they're going through medical school, and they may or may not be doing ophthalmology. They may be going into family medicine or, um, you know, surgery or something else. Um, so, uh, I have those individuals rotate through my clinic quite often. my goal-- So I always have, you know, an agenda here.
So, um, my goal when they come into my is, uh, three things. I want them to understand the two most common forms of inherited retinal disease, which is retinitis pigmentosa Stargardt disease. I feel if they can get a grasp on those two, we've covered a lot of the IRDs, um, because it's the, they're the two most common kind. also want them to realize, um, the definition of legal blindness. You can be twenty/twenty and see the [00:38:00] eye chart perfectly and still be legally blind because you have no peripheral vision. so people need to understand that, you know, people can be blind and still see perfectly centrally. Um, and believe it or not, our society's really bad at that.
Um,
Matthew Reeves: Yes.
Dr. Kimberly Stepien: the harassment I hear
Matthew Reeves: any of that... Does it-- How, how do those goals intersect with the,
Dr. Kimberly Stepien: human beings. Um, so those are the two things I try to ex-instill into their heads. Um, I also have residents who are in ophthalmology learning to be ophthalmologists and, you know, having them understand the importance of, um, you know, providing this unique type of care where we offer genetic testing and, uh, referrals to, um, things that would help an individual, like low vision or, um, uh, or vision rehab or, um, you know, social work, um, that can really help change a pa-- you know, a patient's life.
Um, that is [00:39:00] not normal, you know. It's not something we do, like, for instance, in a cat eval. So, um, having, having them realize that those are important things that need to be done for those, those, um, um, patients is important. uh, you know, trying to recruit more into, um, the retina world and the IRD world is always my goal, too. And then fellows, too, who are, you know, getting further retina training, um, to help them understand not only, like, you know, Stargardt disease and retinitis pigmentosa, but some of the more nuanced things like the syndromic types of RP and things like that, so they, um, know what to look for. And even if they find themselves in a future state where they're really just doing a retina practice, if they see something suspicious, they know what to do to, you know, refer to the correct people if they don't feel comfortable in doing the workup themselves and make sure that they get those patients the care they need, so.
Matthew Reeves: the giving of[00:40:00]
bad news challenge a-and, and training in that regard?
Dr. Kimberly Stepien: it's, it's amazing. Even in our residents, I can see that they're uncomfortable, um, sometimes working with people with visual impairment, um, which is amazing, right? They're ophthalmologists, and they're afraid to work with people who have reduced vision from different causes. So, kinda getting used to, um, you know, how you should interact with those patients, that's, that's very helpful for them.
Uh, it's also important for, um, them to experience what it, um, that, that, that experience of going into a room and telling somebody some bad news. And we do this in a few different ways. Um, you know, I, like I had a medi-medical student with me today, and I had to tell a
Matthew Reeves: Yeah.
Dr. Kimberly Stepien: she couldn't drive today, and so she watched me go through that, that dialogue and that talk and, um, how, how we discussed it and how, you know, we moved forward from that.
Um, but we also do, um, a lot of [00:41:00] training, uh, through like lectures and stuff like that outside of the clinic setting, and we do have sort of, uh, a, a clinic where, or a lecture series where we do talk about what does it mean to like, you know, have to give these diagnoses. Like, well, how, what are some of the things we should be thinking about when we're doing this, um, to take the time to ask, you know, have them be able to answer questions if they need to, those kind of things.
So, uh, we, we definitely try to do that, and I also try to get my residents to understand what it means to be legally blind 'cause they still don't get it either, even in residency. So, it's always a
Matthew Reeves: yeah. That,
Dr. Kimberly Stepien: towards education. Yeah. Yeah.
Matthew Reeves: I think is something that comes up a lot with, uh, for myself and for my clients that the, the very, very broad societal level misunderstanding of the complexities of vision is further [00:42:00] traumatizing when we have to defend a disability or a need for accommodation.
Dr. Kimberly Stepien: Mm-hmm.
Matthew Reeves: it, it, becomes really challenging.
And so, so you're facing that at, at the trainee level. I'm facing it at the, uh, client level. But it's, it's very real. Uh, the, the, the notion that blindness is this binary condition of either you're, you're blind or you're not, and everything's fine, and then maybe there's glasses in between. We understand that pretty well.
But everything else is lost on s- on the vast majority of people, and that's very challenging. Um- You know, it-- as you were describing your clinical experience, uh, something occurred to me and I wanna see if I've got this right because it sounds really like you're threading a needle. Um, it's, it's around the need to both feel comfortable in the conversation, [00:43:00] feel like you're not overwhelmed as the clinician, uh, so, so it can create a calming presence.
Um, and then on the-- but you can't take that too far or it can come across as minimizing, uh, and, and dismissive. Uh, and it sounds like that's a really difficult needle to thread. Uh, am I get-- am I, am I hearing that right?
Dr. Kimberly Stepien: Yeah. Yeah. you know, every person is different too, right? So what might work, uh, in a conversation with one person may not be the way to approach a issue with another person. So, I-I've been doing this now for almost, oh my
Matthew Reeves: Yeah
Dr. Kimberly Stepien: a lot. It's, um... I have had some massive fails, I will admit to that.
you know, it's something that you just have to kinda learn, how to do. And, um, I think, you know, we've all been-- I've [00:44:00] been a patient for different things, right? And I remember feeling that vulnerability and wanting explanations. So I always tell my, my trainees, you know, "Imagine if you were in these shoes, you know, how would you feel? What would you want, you know, someone to, to do or to say, or to help you with in, in this situation?" At least it frames a kind of a state of mind when patient or when, you know, when other-- when my trainees are walking into an exam room. it's, uh, I always say it's, um, it's the patient, and when they're upset, they're not upset at you, even though they may be yelling at you.
Um, they're upset at the situation in which has led to this experience So just, you know, it takes a lot of mental practice to get to this point. Um, I am still learning every day. I learn so much from my patients. Um, you know, hearing their stories helps make me more sympathetic and, [00:45:00] um, can acknowledge and, um, other patients' experiences too because I've, I've-- I can hear it.
But it's, it is, it is hard, um, because every person is different, and everyone needs something slightly different, I would say. Um so, one of the big challenges I've had, and I'm so glad there's people like you out there, um, is trying to get mental health help for patients who are undergoing, um, you know, something like this. uh, our, our mental health in America is d- Dismal, I would say the least. And when it comes to the subspecialty of care, um, it is really frustrating. Um, so-- 'cause even if I can get a patient to a therapist, sometimes the therapists have no clue how to even help a person who's going through this experience.
And, um, so I'm very proud of FFB and, um, I'm part of their mental health [00:46:00] task force or council, I forget what we call ourselves, um, that is working to give training to therapists too, um, so that they are more of aware what it's like to work with a patient who's losing vision and hopefully making, um, the, the kind of the network of patients or of therapists that we can refer our patients to a little broader, which is, which is so needed.
Oh my gosh.
Matthew Reeves: Yes. Yeah.
Dr. Kimberly Stepien: there's, there's only so much I can do. I, I can't be their, their, their mental health therapist too, and yet when I refer them off, it's, it's they're not getting that help either, which is really hard and really frustrating.
Matthew Reeves: Yeah, and I think that's something that might be helpful for, for people to hear is that, uh, their frustration is at a life-changing level, but they're not alone in it. Uh, I'm frustrated that there aren't more people doing what I'm doing. You're frustrated that there aren't more pe- more people, you know, doing what you're doing in the way you're doing it.
We're all frustrated at the system for [00:47:00] being, um... Well, I won't get on a soapbox about that, but the system is failing us,
Dr. Kimberly Stepien: Yeah.
Matthew Reeves: uh, and needs reform, uh, in order to serve us better and to treat people with dignity. So the frustration is shared. Um, and unfortunately, any one of us in, in, in any one moment may not feel like that, that, that, that compassionate response is there for them, but in fact it is.
It's just often that we don't have the, the resources to share it or to do anything about it, uh, or the time, uh, because of systemic problems. So, uh, I can appreciate that. And I, I, I really appreciate another thing you said, and that was that you, you encourage your residents to Act-- you actively ask them to engage in empathy.
Slow down for a moment and think about what it's like on the other side.
Dr. Kimberly Stepien: Yeah.
Matthew Reeves: Uh, and I think empathy is a muscle that we can choose to exercise and we can choose to not exercise it. Uh, [00:48:00] and so I, I'm very grateful that you as a, as an experienced clinician are encouraging young clinicians to value the exercise of empathy, uh, 'cause it's a choice.
Um, so thank you.
Dr. Kimberly Stepien: Yeah, it's, it's really impressive, too. You know, I have many trainees, so, you know, um, I work with many residents, and there are some who get it and some who just can't get it. It's amazing. No matter what we do, they just don't have that gene or something, which is also frustrating. And I know patients run into these doctors where they're excellent doctors, but they may not connect with the patient the way the patient wants to be connected with. Um, doesn't mean that they're giving bad care. It's just that they're not emotionally at a point where they're connecting with their patient to help the patient in a way other than fixing their bone or, you know, fixing their cataract or whatever it is. Yeah.
Matthew Reeves: Right. They're, they're giving excellent care to a body part, but maybe, maybe not to the whole person.
Dr. Kimberly Stepien: Yeah.
Matthew Reeves: Uh, and I think that that is traumatizing when [00:49:00] somebody in a position of power, and let's face it, that's what it is, it's a position of power, uh, is, is treating us as an object. Uh, and I think I, I, I want people to hear that if that's been traumatizing to you, that makes sense.
Dr. Kimberly Stepien: Yeah.
Matthew Reeves: that is a, a, a pretty
Dr. Kimberly Stepien: And
Matthew Reeves: experience to go through.
Dr. Kimberly Stepien: yeah, I-- to, to be fair, you know, we have people in our, in our lives that are more emotionally available than other people, right? Th-that's normal that not every physician is going to be a person that's gonna really have those qualities. Um, I, I... So be-- I guess we all need to be gentle, I guess, as in a way.
It's
Matthew Reeves: Yeah, absolutely.
Dr. Kimberly Stepien: to be mean or horrible. It's just maybe it's not part of our either that we behave in that way. It's some people have different qualities than other people and,
Matthew Reeves: Yeah. Yeah.
Dr. Kimberly Stepien: that, too. Doctors are humans, too.
Matthew Reeves: [00:50:00] Absolutely. That... And that's a great bookend. Uh, as we started the conversation, uh, my, my goal for this conversation was to humanize the doctor
Dr. Kimberly Stepien: Yeah.
Matthew Reeves: so that, so that we don't just vilify a, a very bad experience.
Dr. Kimberly Stepien: Yeah.
Matthew Reeves: there's, you know, n-no... I really don't believe that hardly anybody is trying to be cruel.
Uh, that's just, that's not the intention. Um, sometimes we need or want, it's complicated, to cast the role of villain. Uh, and sometimes that's easier than other times.
Dr. Kimberly Stepien: We all
Matthew Reeves: but In the long run, that rarely serves us very well. Um, so empathy on the part of the patient is also very valuable. Empathy is great all around on every side.
Yeah. Yeah.
Dr. Kimberly Stepien: give each other a little grace. Um, and it's hard to do, especially in our day and age now. Um,
Matthew Reeves: Yeah. Yeah, and especially in we're in a-- when we're in a moment of, you know, uh, it-- on, on the day that we receive a life-changing [00:51:00] diagnosis,
Dr. Kimberly Stepien: Oh, it's
Matthew Reeves: exercising empathy is a profoundly difficult task. Uh, so that takes time.
Dr. Kimberly Stepien: Mm-hmm.
Matthew Reeves: so
Dr. Kimberly Stepien: Mm-hmm.
Matthew Reeves: well, uh, before we completely wrap up, is there anything else that you want to share?
Any final thoughts that you may wanna communicate to, to this audience?
Dr. Kimberly Stepien: I guess,
Matthew Reeves: Message.
Dr. Kimberly Stepien: uh, remember that, um, you are not stuck with one person. There are other doctors out there. So, um, I always encourage, you know, if I don't connect with a patient or, um, don- don't seem to be the right fit for a patient, I, I encourage them to look for another person to work with.
Um, don't give up, don't disappear. There, there's a lot of help that can be given. You just sometimes don't find it on the first or second or third strike, you know, right? So, keep looking. Um, there's wonderful organizations out there too. Um, some of that is just an education thing [00:52:00] to understand that those, those entities are out there that can help you and make, life a great thing.
You know, vision impairment is just a thing, right? I, I'm not minimizing it, but you can do so much. I have patients who are CEOs and go to law school and are physicians and, you know, um, we can, we can help you in continuing to reach for your goals. It might have to be a little different way than it was before, but, um, you can get there.
So you're, if you've had a traumatic experience or if you've had something that just, um, you're not connecting with the person who's taking care of you, please, I look around. There's other people out there. And if you have mental health issues, um, please get help for those too. Um, even with the most empathetic, you know, physician, um, we still have patients who, um, are just w- need more than that, um- Right to get them through this situation. [00:53:00] Um, know, I unfortunately have lost a few patients to suicide, which is really devastating to me, um, because we thought we were getting them the help they need. Um, but if you've ... if the world is getting very heavy, please search out, um, help for that. There's a lot of people who will care for you and help you and make the world a brighter spot and lighten the load on your shoulders.
So, those feelings are real and, um, you know, very, uh, appropriate in these situations of getting this kind of diagnosis. Um, but know that we can get you help and, um, life can ... i- is a beautiful thing. Um, we just may have to approach it a little differently.
Matthew Reeves: Well, Dr. Stepien, thank you for your big heart
Dr. Kimberly Stepien: Thank you.
Matthew Reeves: in this, in this world that, you know, as we've discussed, is often not focused on, on the heart side of things. I'm really grateful, uh, that you're out there doing the work you're doing. Uh, it is, it is making a difference, and it's serving as a model.
Dr. Kimberly Stepien: [00:54:00] And
Matthew Reeves: So thank... And you're doing a lot, so thank you. Thank you very much, and thanks for making the time.
Dr. Kimberly Stepien: Yeah, and grateful to work with the people I work with too. Um, you know, My patients are my true heroes. They really are. So,
Matthew Reeves: Ah,
Dr. Kimberly Stepien: yeah.
Matthew Reeves: what a lovely thought. Well, thanks for your time,
Dr. Kimberly Stepien: Thank you.
Matthew Reeves: and, and all the work you're doing, so all right, we'll wrap it up. We'll leave it there for today. Uh, all right. I appreciate it, and, uh, hopefully we can talk again sometime.
Dr. Kimberly Stepien: Sounds good. Take care.
RECAP
Matthew Reeves: Sitting down with Dr. Stepien reminded me that while receiving a life-changing vision diagnosis can feel incredibly isolating and traumatic, there are clinicians out there fighting hard to change that. Her dedication to integrating mental health, grief training, and social work directly into the ophthalmic care experience is a beautiful blueprint for what medicine should be.
This conversation vividly [00:55:00] reinforced that empathy is a vital choice we must make on both sides of the exam table. If your diagnostic day lacked compassion, please remember that your experience is valid, and you're not stuck with one doctor or one systemic perspective. There is a rich, supportive community waiting for you, and your life can still be profoundly gratifying.
OUTRO
Matthew Reeves: Thanks for joining us for this episode of Insight Out. You are the reason this podcast exists and we'd love to hear from you. You can leave us a voice message at speakpipe.com/insightoutpod. That's speakpipe.com/insightoutpod. There, you can share your thoughts about today's conversation, suggest a topic for a future episode, or tell us about your experience living [00:56:00] with vision loss. Again, that's speakpipe.com/insightoutpod.
Insight Out is produced by Integral Mental Health Services, my private practice that offers psychotherapy for adults in Georgia and disability adjustment and chronic illness counseling nationwide. Visit us at integralmhs.com and you can visit insightoutpod.com to catch up on all the episodes and to find links for subscribing in all the major podcast apps. A video version of this podcast is available on YouTube. Search for the channel, using the handle @inSightOutPod. You can also find us on social media using that same handle. I hope you'll join us for the next episode of inSight Out. Subscribe now in your favorite podcast app to stay connected. Thanks again for listening. [00:57:00]