[00:00:00] Adam Walker: From Susan G. Komen, this is Real Pink, a podcast exploring real stories, struggles, and triumphs related to breast cancer. We’re taking the conversation from the doctor’s office to your living room
[00:00:17] Welcome to the Komen Health Equity Revolution Series on Real Pink, where patients, advocates, researchers, and community partners come together to talk openly and honestly about what’s standing in the way of breast health equity, and what we’re doing to change it. I’m your host, Adam Walker. This month is Disability Pride Month, and we’re using it to talk about something people don’t always connect.
[00:00:40] Disability and breast cancer can intersect in more than one direction. For some people, disability shows up after treatment, things like lymphedema, neuropathy, or chemo brain, which are recognized under the Americans with Disabilities Act. For others, disability was a part of their life long before a diagnosis ever entered into it.
[00:01:00] Either way, the disability matters and so does the support available around it. Back with us today is Krista Park Berry, director of Komen’s Breast Care Helpline. If you caught her last visit on the show, you already know the helpline well. Today we’re digging deeper into what disability and the breast cancer experience actually look like together, whenever that disability started, and what that means especially for women of color.
[00:01:24] Krista, welcome to the show.
[00:01:27] Krista Park Berry: Oh, thanks, Adam. I’m really excited to be back here today.
[00:01:30] Adam Walker: Well, I’m excited ’cause I love talking about the helpline and I love talking to people that are involved with the helpline, and the helpline is just, in my mind, one of those magical, amazing parts of Komen. So, so thank you first for what you do and for the, the service that it offers.
[00:01:45] I think it’s so critically important. So all right, so let’s get to the, the topic here. So let’s start with the distinction at the heart of the episode, which is, you know, disability can show up because of breast cancer treatment or it can already be a part of someone’s life, you know, before the diagnosis.
[00:02:01] So how differently do those two experiences play out for the callers that you talk to on the helpline?
[00:02:08] Krista Park Berry: Yeah, no, great. Thanks. So one of the biggest things that we hear is that no two disability experiences are the same, right? So even when people share the same diagnosis, some callers maybe have lived with disability for years before breast cancer comes into their lives so they’ve already been navigating accessibility, accommodations and often fragmented healthcare systems, right?
[00:02:34] Others, a breast cancer diagnosis adds a layer of complexity that’s already feels like a full-time job managing their health. You also noted, right, others develop long-term effects because of their breast cancer treatment, things like lymphedema, neuropathy cognitive changes that we call brain fog, even mobility issues and limitations.
[00:03:00] And many people don’t think of these changes as disabilities because they associate oftentimes disabilities with something that’s more permanent or perhaps originated from a younger point in their lives or at birth. So really it takes people some time to recognize that the symptoms that they’re experiencing are affecting their ways of– affecting their lives in meaningful ways I mean, really, I think regardless of someone, how they arrive at that disability, the common thread is that people deserve care that sees the whole person, right?
[00:03:37] And that support and access to resources to really help them maintain quality of life.
[00:03:42] Adam Walker: I love that you just said, “People deserve care that sees the whole person.” That’s beautiful. I love that. Thank you. That’s a… Yeah, I love that a lot. I’m I’ve never heard it that way, said that way. Okay, so for someone whose disability results from treatments, like you mentioned lymphedema, neuropathy cognitive changes what does that recognition under the AD- under ADA actually unlock for them in practical terms?
[00:04:08] Krista Park Berry: You know, great question. So again, while every one situation is unique recognizing that treatment-related impairments may qualify as a disability under the Americans with Disability Acts can really open a door to conversations about reasonable accommodations for patients. So it’s ano- definitely another piece of information or a tool to add to their tool belt.
[00:04:32] And what those accommodations can look like for individuals is workplace accommodations, changes in schedule. Maybe individuals need different ergonomic equipment. Perhaps they need additional breaks during treatment or recovery. It can also help people advocate for accessible medal- medical care.
[00:04:54] Maybe they need longer appointments, multiple appointments to get through something transportation support, or even educational accommodations if a patient is in school perhaps. And I would say, just as importantly recognizing changes as disabilities really help validate also what someone’s experienced, right?
[00:05:19] So breast– If you think about it, breast cancer patients are expected to kind of bounce back. So they often tell us this, right? Like after treatment, I should be able to, you know, manage what’s going on and get back to ma-my daily life. Or for individuals who are living with metastatic breast cancer, right, treatment never ends.
[00:05:37] A lot of times you can’t tell that someone is in treatment and is living with this chronic illness. But yet persistent fatigue is something we know is really debilitating and it can impact everyday activities, work, overall well-being. So on the Helpline, we don’t provide necessarily legal advice to patients, but we can definitely help connect them to trusted resources to really better understand their rights and available supports, including the more information about the American with Disabilities Act.
[00:06:10] Adam Walker: Okay. Now you mentioned MBC. So so what does the Helpline offer i-in the way of, like, support for survivors or individuals living with metastatic breast cancer or MBC who previously had or are now categorized as a person living with a disability?
[00:06:26] Krista Park Berry: You know, when we work with patients with MBC, they you know, have needs as all other types of patients, right?
[00:06:32] Except that we really recognize that a lot of the things that they’re facing are gonna be long-term and kind of ongoing. So with every patient that reaches out, we start with kind of where are you, what’s going on with you now, and how can we help? So a lot of times long-term plans for financial assistance or financial management to be able to main- you know, maintain some balanced finances when going through treatment transportation resources, support groups mental health services, even access to organizations that may specialize in disability service whether they’re someone who has had a preexisting disability or one resulting from the treatment themselves.
[00:07:16] And we also recognize for individuals living with metastatic breast cancer that their needs may evolve and likely will evolve over time. Some of that symptom management, maintaining independence, you know, the longer they’re on some medications, it may contribute to that chemo fog, fatigue, neuropathy that we’ve talked about, right?
[00:07:37] So oftentimes finding resources, connecting with others i- is some of the things that we can do on the helpline, right? That we’re really there to understand their challenges and really help them figure out the next best steps so that they don’t have to do
[00:07:55] Adam Walker: it alone. I love that. Love that.
[00:07:57] We’re there, it I love, again, I just, I love what the helpline does. It’s just so, it j- it fills my heart, you know? It really does. I would imagine it’s so rewarding for what all of you do, so, Definitely. Thank you.
[00:08:11] All right. So for someone who was already living with a disability before their diagnosis, like what changes about their care and support n- like needs once the- once they have the diagnosis? Like once, like what, what changes for them, and what do you wish the broader healthcare system understood about that?
[00:08:31] Krista Park Berry: Oh, great questions. Great questions. So I always like to say breast cancer doesn’t replace everything else someone is managing, right? It only adds to it. So when we’re thinking about people living with disabilities, they’re often coming into a cancer diagnose knowing more about how to advocate for themselves, but it doesn’t mean that the system’s any easier to navigate, right?
[00:08:53] It’s just, again, on top of what they’re already having to manage for their
[00:08:58] health. Breast cancer treatment can interact with existing disabilities in ways that providers may not always be able to anticipate either. As I said earlier, someone may need accessible imaging equipment. They may need longer appointment times. They may need someone there to help them communicate and really understand what’s happening.
[00:09:22] Transportation assistance is always one that also comes to mind when we think about physical disabilities. But you know, someone with a cognitive disability you know, may need something different in that room that a doctor may not know in advance of the patient coming. So I think a– when I think about what I’d like the broader space to know about is that really accessibility is often thought of in physical spaces, right?
[00:09:50] But true accessibility is gonna include clear communication, flexibility, coordination with providers, and really partnering with patients in an intentional way to ensure that the treatment is working within the context of their daily life and supports them in what they’re, that they’re y- what they need at that moment for their care
[00:10:13] Adam Walker: Now, so, so speaking of accessibility, i- is the helpline is it set up differently for someone navigating with a preexisting disability versus someone adjusting to a new one?
[00:10:24] Or does the support look similar or more similar than people might expect?
[00:10:29] Krista Park Berry: Yeah, no, I think from our end the support is similar, right? Okay. You know, anybody who reaches out, we start with, “How can I help you?” You know? And if someone… When we think about some disabilities, right, we have a language line if there’s a language barrier with someone who may not be able to hear, right?
[00:10:48] So deaf and hard of hearing- May be able to access through email, or they can connect through an interpreter service and/or even our a tele- telephonic service that helps translate for individuals. But really, whether someone has lived with a disability for decades or, again, it’s kind of resulting from their treatment, we just start first and foremost by listening.
[00:11:13] Right? We want to understand what’s really impacting the most right now. And from there, we really tailor our conversation and resources to their goals, right? Like, whether that’s returning to work, managing systems, perhaps finding financial supports or even finding some additional emotional support.
[00:11:33] We really let them guide the conversation because their circumstances may differ, you know, but regardless, everyone deserves that compassionate and individualized care.
[00:11:44] Adam Walker: Love that. I love that you start with with how can we help, right? I got… I like that. I love that mentality.
[00:11:50] So good and so important, I think for what you do. All right, so, so, so back to ba- a question sort of back to NBC for a moment. How does support in survivorship and for individuals living with NBC look different for women of color living with a disability and where are there gaps that you see most often?
[00:12:11] Krista Park Berry: Oh, yes. This is such an important question to touch on. We know that women of color often face additional barriers that can affect both breast cancer outcomes and quality of life. I’m sure you talk about this all the time on the podcast, as Komen is really committed to qu- conversations around health- health equity.
[00:12:31] And those barriers can include differences in access to care, insurance coverage, transportation, as I’ve mentioned, financial concerns, and even bias within the healthcare system. So when disability is added to that picture, right? I said this is an addition. Breast cancer is always an addition to what someone is also already managing, that those challenges can just become even greater.
[00:12:57] So one of the biggest gaps is really making sure that support is culturally responsive and accessible when people need it. And so everyone deserves that care, right, that respects their lived experiences. And I think really what we can do on the helpline is connect individuals with community-based organizations and really trying to find the response and support that meets their needs in, in a way that, again, continues to be sensitive and understand their experience and hopefully help close some of those gaps and disparities
[00:13:36] Adam Walker: So is there a call, I mean you know, without giving names or details but is there a call that sticks with you where, you know, the helpline made a real difference for someone navigating a disability and survivorship, or maybe living with MBC or altogether?
[00:13:53] Krista Park Berry: Yeah, so I think one call that has kind of stuck with me that one of our helpline navigators shared was you know, h- how she was really impacted by supporting someone that was just really overwhelmed with treatment side effects. It had really changed what they were physically able to do, and really didn’t know where to turn to.
[00:14:16] And I think it was a complex case, right? They weren’t just asking about one resource. They were trying to figure out how to work, how to get to appointments, how to manage daily activities, how to interact with their family, and just overall cope with emotionally how their life seemed to be changing so quickly.
[00:14:34] And really the work of the helpline is that, a- as I noticed or as I shared earlier, is we really are able to connect them with resources and help them prioritize the next step. So we’re not gonna necessarily fix their problems, but, right, help to kind of ground in really what they need and make a plan for what’s next, and I think that’s often the difference that we can make on the helpline.
[00:14:58] Another call also comes to mind about an individual that you know, was in a wheelchair and needed to find an accessible place for a screening, right? So those are just two examples of calls that come that again, we want to be that connector. We validate and really try to make a plan so that someone can continue to get the care they need and live with the quality of life they deserve.
[00:15:23] Adam Walker: I love that you talk about, you know, making a plan because I feel when people feel out of control or overwhelmed, like, just a simple plan can make such a huge difference in that feeling, you know? Yeah, I love that.
[00:15:36] Krista Park Berry: Definitely leads to control. Just having more information- Yeah … or being able to organize, to be able to sit and organize your thoughts-
[00:15:43] Adam Walker: Yeah.
[00:15:44] Yeah …
[00:15:45] Krista Park Berry: C- Could really be a gift.
[00:15:48] Adam Walker: Yeah. Or just even know that there is a next step, and to know what that next step is can be, I think, profoundly freeing to someone. And so, so anyway, you m- you mentioned make a plan twice, and so I just like-
[00:16:00] Krista Park Berry: I appreciate that.
[00:16:01] Adam Walker: Yes. Yeah. Yeah, it’s so good.
[00:16:02] That’s so good.
[00:16:03] Krista Park Berry: Thank you.
[00:16:03] Adam Walker: So what, what keeps people from calling in the first place, especially if they’re- Oh … if they’re not sure if their situation even counts as a disability?
[00:16:13] Krista Park Berry: Yeah, no, I’m so glad you asked this because I think a lot of times someone is hesitant to call. A lot of times we hear, “Gosh, I just don’t think I have it as worse as someone else.
[00:16:24] I don’t wanna take up the resources that someone else may need.” you know, a- as opposed, or even having questions is this really what I’m experiencing? Does it qualify? You know, they may not even assume that fatigue or brain fog is something that has a name. It may be just something they have to deal with.
[00:16:47] So, you know, I think reminding patients that support exists beyond their medical care team I always tell people you don’t have to have everything figured out. You know, you don’t even know, need to know what resources you need or what your experience fits, that we’re really here to listen and help you figure it out, right?
[00:17:08] So if the impact of breast cancer is affecting your daily life, that’s reason enough to give us a call. You know, reach out. We’re here to listen. We’re here to help you find that information and resources that you’ll find hopefully beneficial and helpful to the situation at hand.
[00:17:25] Adam Walker: All right, Krista for someone who’s listening and living with a disability, navigating breast cancer survivorship or living with metastatic breast cancer, what would you like them to know about the support and resources available to them?
[00:17:40] Krista Park Berry: Yeah. First and foremost, we want people to know that you don’t have to navigate this alone. You know, Komen is here for you, and whether someone’s lived with a disability their whole life or have developed one during or after treatment, or even are living with metastatic breast cancer, all experiences are valid and needs matter.
[00:18:01] There are organizations, professionals, communities that are ready to support patients, not just even medically, but emotionally and practically, financially. So reaching out for help for us isn’t necessarily a sign that you’re not coping. We want people to remember that it’s really a way of building a support system that you deserve and that, that…
[00:18:24] And so that really people can focus on getting back to their life and living it as fully as possible. So even if you’re not sure where to start, you know, that’s exactly what the hope- the helpline is here for and that, you know, Komen is r- hopefully can be a trusted partner to all patients, no matter where they are on their journey.
[00:18:45] Adam Walker: I love that. Krista, you and the helpline team are amazing individuals, an amazing team, and listeners, if you need help that is the place to call so make sure to do that. Krista, thank you so much for joining us on the show today.
[00:19:01] Krista Park Berry: Thank you again for having me, Adam. It’s been great.
[00:19:03] Adam Walker: And I should also say thank you for helping us hold, you know, both sides of this conversation, disability that starts with treatment and disability that was already there.
[00:19:12] To everyone listening, whatever shape your disability takes, and whenever it started, you are not on your own, and this is support built for exactly your situation. The Health Equity Revolution keeps moving because of people like you and guests like today’s refuse to let it stop. For more resources and support navigating a breast cancer diagnosis and a disability, visit komen.org.
[00:19:37] Our breast care helpline is also available at 1-877-465-6636 for help, or email helpline@komen.org. This is Real Pink. I’m Adam Walker. Until next time.
[00:19:50] Thanks for listening to Real Pink, a weekly podcast by Susan G. Komen. For more episodes, visit realpink.komen.org, and for more on breast cancer,
[00:19:58] visit komen.org.
[00:20:00] Make sure to check out @SusanGKomen on social media. I’m your host, Adam. You can find me on Twitter @AJWalker or on my blog, adamjwalker.com.