Julie Larson, LCSW on Guilt & Stress

Survivor guilt … it’s time to talk about this reality

We don’t talk enough about it … the guilt, the stress, the feelings that it’s just not fair … 

Cancer flips you on head. The question of “why me?” can haunt any cancer patient. Everyone knows someone who had cancer and died, and those stories surface and circle around in your head. Everyone knows someone who had cancer and survived with fewer treatments and a faster recovery, and you wonder why this isn’t you. Everyone also knows somebody who fell into a dark hole of depression after a cancer diagnosis, and you wonder when this is going to happen to you. Cancer patients often find themselves comparing their medical condition and feelings to everyone else’s and trying to figure out what to do, what to think and how to act. The result can be overwhelming stress and guilt. 

During The Breast of Everything podcast, Julie Larson, LCSW, a mental health therapist who specializes in oncology supportive care, talks with Comprehensive Breast Care Surgeon Linsey Gold, DO, FACOS, FACS, about dealing effectively with the stress and guilt that often accompany a cancer diagnosis. 

Transcript

00:01

Welcome to the breast of everything podcast your trusted resource for breast health information support and encouragement. Your host today is Dr. Eric brown of comprehensive breast care. Welcome.

00:13

Welcome to the breast of everything podcast. I'm Dr. Eric brown of comprehensive breast care. And we're fortunate today to have my guest Julie Larson, a psychotherapist from New York, who will talk about survivor guilt. Julie's dedicated a great deal of her career to and colleges supportive care. She has a vibrant private practice working with individuals mostly under the age of 40, who face an unexpected medical diagnosis. Julie is a frequent speaker and educator on the impact of a serious illness at a young age, living fully after a cancer diagnosis and resilience. Her clinical work integrates cognitive behavioral, mindfulness, and Narrative Therapy. Working alongside her clients and audiences, Julie helps people identify inherent strength, and cultivates additional resilient behaviors to build confidence in their ability to navigate hardship. Julie's clinical work has led her to be a trusted adviser to many advocate organizations. And she has been featured in various publications including copii magazine cure, and refinery 59, as well as many other wellness and survivor blogs. Thank you so much. And welcome, Julie. Thank you so much for having me. I'm happy to be here. Well, it's great to have you. I think it's interesting concept survivor guilt. Maybe if you could take a minute and describe for our audience exactly what survivor guilt is. So glad you asked. And you know, Dr. Brown, I think that in all of cancer survivorship survivor guilt is often something that we don't talk enough about. So kudos to your team, for scheduling this podcast and and talking more in depth about this topic. survivor's guilt is is that feeling of not fair, and goodness that that sense of injustice hits from the moment you hear that word, you have a diagnosis of cancer. But initially, I think some of that fear and uncertainty goes hand in hand with your own health and and will your future be it stable? And where is the horizon line? And will I be okay, and what will happen to me and my family? And survivor's guilt kind of flips that on its head. And it's when perhaps you've gotten close to a group of peers or other cancer survivors and others aren't doing as well as or someone unfortunately passes away. And then the question turns from not why me but why not me? And that's a really confusing feeling. It's a sense of not fair, it's not fair that this good friend that I've known is progressing or had a recurrence. But I think there's many different types of survivor's guilt. And that's the most that's what first comes to mind. I think when we say those words, cancer survivor's guilt, is when we know someone who's had a progression or recurrence, or has sadly lost their life to cancer. And those questions of why not me kind of are part of the struggle. Yeah, I think that's a great description, and we see it every day I was in office today. And fortunately, a lot of women are diagnosed with breast cancer on a screening study. And that means less treatment, that means less recovery. And many women will say, you know, a lot of people have it worse than me. So I'm doing just fine. And you know, these women make friends when they're doing radiation, they have a whole group that are there the same time every day. And you see other cancers and other women with breast cancer that aren't doing quite as well. And we take a lot of time explaining to them that your cancer is still important. And the fact that I was really diagnosed and readily easily treated, doesn't make it any less of a cancer. And, you know, I have also sat in mixed cancer diagnosis groups, where there are different diagnosis of cancer within the room. And I watched uniquely for women with breast cancer where there is a standard of care that for some has, it has a pretty good prognosis, I know. But for others, not our people get diagnosed at younger earlier stages and in that room, often dismissing themselves or minimizing themselves, oh, I just had surgery. I just had radiation I you know, as if that what you've gone through has been less than somebody else in the space. Yeah. And it makes me kind of sad when people view themselves that way. Because you know that diagnosis once you hear those words, that it's a life changing moment. Whether

05:00

could go through a ton of treatment or just a little bit of treatment, it's still treatment. And there's still always that risk of recurrence. And

05:08

Dr. Brown I also think that survivors do that for themselves, they dismiss and they minimize, you know, their own diagnosis, sometimes in the presence of others. But others do it too. You know, I sit in my office with people one on one, and they walk in the door and they're struggling with survivor's guilt, or among many complex feelings. And, and their their emotion is not only their own, but they've heard it from others. Oh, don't feel that way. You shouldn't feel that way. You've done nothing wrong. You Are you okay? So I think not only ourselves and has minimized but others who in really well intended ways don't want us to suffer, don't want us to struggle. And so they minimize those feelings of guilt as well. Yeah, it's interesting how others as well meaning as they are telling you how you should feel at that is, is a challenge for sure.

06:00

Was there anything in particular in your career that kind of led you to this? Were you? Did you gravitate towards it? Or was there patients that kind of, you know, struck a chord that made you want to dive more into it? What was it that led you here, I think that would lead me to working with those impacted by a medical diagnosis, and specifically cancer. I my training is in social work and social workers go through graduate school from a very strength based perspective, lens. So our entire training is is kind of this grounding of like, Where are that? What is the resilience? What is what is it that's getting somebody through the day or through this really difficult circumstance in their lives, whatever that might be. And for me, that just my graduate schooling just really bred within me this curiosity, and this just interest in listening closely to people. And so I gravitate to working with people diagnosed with cancer, and at this point in my career, many different medical expenses, because when they walk in, I'm sitting with people who in many ways were functioning, and through their lives in pretty, you know, well, meaning Well, you know, good ways. And then this diagnosis and acute diagnosis comes in, and that seems to kind of spin everything around and leave people like feeling like, well, now what, and I just find there's something really meaningful sitting there and helping people to kind of reclaim what it is within themselves, that has always been there, what strengths still exist, and what we can build and grow. So I like that work of kind of putting the mirror up and showing people themselves a little bit. That's kind of part of what drives me to it. Yeah, that's great. I'm a firm believer that anybody with cancer, but in our world, specifically women with breast cancer, you really do realize how much strength you have within yourself to get through this, you know, your life on Tuesday is different than it was on Monday, once you get that diagnosis, and it'll never go back to Monday. Now, and when you're suffering, and when it's feeling really fragile, it's really hard to see that for yourself. And so we I think it takes having a solid medical team that is, sitting around you, a good therapist that you trust and have confidence in are really intimate, good friends who can like I said, reflect back to you yourself, so that you kind of find yourself in this again, and you know, oh, yeah, I can do this or look at this, you know, show you what you're already doing. I say to people all the time, when they're sitting across from me, you're sitting here with me, how did you get here? What What is getting you from the beginning of the day to the end of the day? What stops you from crying, you know, so kind of helping people to begin to look closely at what they're doing on their all on their own? Yeah, it's, it's challenging as I can only imagine because there, it's like the stages of grief that you go through no matter how minor quote, unquote, your diagnosis might be, you're a different person after the treatment, and

09:11

you'll never be the same, but you could be better. And I think many women find that in themselves. I love that you just said the stages of grief with like, a perfect like flow in this too. Because I think of survivor's guilt as a type of grieving. You know, it's grieving maybe for on behalf of somebody else, right. And the and you're, you're so intimately aware of what that fear is within yourself, that you're feeling it for somebody else, you're grieving it in some ways. And you know, there are different types of survivor's guilt, and sometimes that grief is something to pay close attention to, what is it telling us? What is it what is it showing you in terms of the diagnosis itself are there different levels of guilt are there

10:00

most or all treated with talk therapy? Or are there more severe forms that need more types of intervention? An important question, you know, I've referenced a couple times that there are different types of survivor's guilt we use classically think of when someone that we know and love or that we're familiar with maybe somebody that you don't even know, you know, I used to work in a national organization, and there would be a huge uptick in intake calls. When somebody famous like a celebrity was diagnosed with a recurrence or someone had passed away that was well known Patrick Swayze, Elizabeth Edwards, I remember those moments in my career Early on, and the flooding of calls. So it may not just be somebody that's close to you. But I think there's other types of survivor's guilt that perhaps are a bit more sneaky, that people feel the weight of that they may they don't know how to name. And I see that show up. When people begin to feel really teary sadness. Or maybe it's pressure and anxiety around. I everybody else is telling me that I should feel so different now that I'm post treatment, that I should do something with the fact that I'm a survivor now, or what have I learned? Or do I do I have? Do I see everything? You know, the glass is always half full, and you stop and smell the roses. And I'm not feeling that way. I'm feeling sad. I'm feeling unmotivated. I'm feeling lonely. And I'm really worried that I'm not doing cancer. Well, I'm not measuring up in the way that I should having survived this. And I think that's a form of survivor's guilt. Yeah, I totally agree.

11:45

Yeah. And I think that's grief, too. It's your grieving the life that was before that diagnosis, and, and really working to better understand yourself now. And cancer change, as you know, you know, cancer changes you 100% Yeah. And it takes time to learn how. And it's interesting, because often we will see a patient kind of mid treatment. So they've finished their surgery, they finished either chemotherapy or radiation. And they come and see us and one of their biggest complaints is that they're exhausted, that they're just exhausted. And I think that what most don't understand or realize is the amount of energy, both physical and emotional energy that goes into getting diagnosed, whether it be a mammogram first, and then diagnostics and waiting for results. And by the time you're done with your treatment, anybody would be emotionally exhausted at that point. Truly, truly, and, and I think that, you know, one of the first things I say to my clients that I work with, and where I always often begin, in my work in my office about self care is step one, let's begin cultivating a habit of noticing. Because to your point, you're going through appointment, appointment appointment, you're managing side effects, you're getting used to living your life and your whole lot more than cancer, right? So there's still other things that are happening in your world. And all of that is happening. And really what I've been really noticing how we're feeling, you know, how am I doing here? And so that's, I would say, the first muscles to begin to build is just to begin to notice, how am I doing? Am I feeling agitated? Am I feeling lonely? Am I feeling misunderstood? Or am I feeling really sad? What What is that? And that begins to lead the way to caring for yourself? Exactly. I couldn't agree more. I think that, you know, many times, in that stage of your treatment, you find yourself driving in your car alone, and all of a sudden overwhelming sadness comes over you. And why is that happening? Now? I've just had my surgery, I just had my diagnosis, but there's no distraction at that point. So you can really absorb what you've just been through and what the impact it has on you. Those feelings are waiting for you have a question about that. We do hear that quite often about you know, it wasn't as bad for me it was like it was for somebody I met or radiation or you start to get this sense that there's either a little bit of depression, or this survivor's guilt. When is it time for us as clinicians to say, you know what, I think we need to maybe get you to talk to somebody. Was it that tipping point? Yeah, and I you might have asked me that earlier, and I kind of went off on tangents. So thanks for bringing me on back. You're right. Yeah, you're right. We waited when when do we know what's the what's the you know, the white flag or that would says, Hey, this, we need to take a little closer attention. I tell my clients and what I'm watching for is how much is this getting in the way? So the guilt, sadness, anger all

15:00

Those are feelings and they're natural and understandable to have, we don't need to pin them down or shove them away or avoid them, letting them in and experiencing them as part of caring for ourselves. But when those feelings kind of go ahead, they have a tipping point. And they kind of just, they're increasingly intrusive. They're it's very, it's it's hard to to focus, when feelings are so fragile that they're right on the surface. And they're hard to kind of compartmentalize or to focus on work, or staying in relationships to be able to navigate and have a spectrum of emotion. That's when I think we need to look a little closer. So it's when it's getting intrusive. And when it's impacting functioning. I gotcha. I gotcha. So when your life is kind of somewhat focused on this, and you can't get on with the normal daily activities that that we want to get back to? Yeah, it's keeps pulling it back. And to have that feeling there is fine to be able to coexist with two feelings. At the same time. I say to my clients, you know, how do you hold hope and fear in one hand, but when you can't do that, when you can't have more than one feeling at a time that flexibility in that one? It just kind of persistent. Great, great, thank you. Thank you for that. I want to transition a little bit.

16:20

We are seeing more and more younger patients diagnosed with breast cancer. And I've have patients in their 20s who are diagnosed. And there are additional issues beyond your chemo, your radiation, your surgery, especially in young women who aren't married, haven't had children, yet the effects of chemotherapy on your ability to have children. And I know in your practice, you deal a lot with younger and I guess how we define young changes every birthday I have. But what are the differences between the will say premenopausal, that's how we gently say younger in the breast cancer world, patients that are diagnosed with cancer, because I mean, they got their whole life ahead of them and boom, this hammer came down. Yeah, there are some distinct differences. And, and there's been increasing focus and research on that over the last 15 plus years, I would say in my what I would name is one of the biggest ones is that while you are seeing more young women in your office being diagnosed, it is still not the overwhelming number of cancer survivors. So I think one of the biggest issues for young women or young adults with cancer is a true feeling of isolation, not likely no one else their age is dealing with this. So it feels very isolating and lonely. And not only are they going through treatment to your point, and that's very different than their peers. But they're you're at an age in your life where you're building your career professionally. And many people don't want this to get in the way of that. It's that it's that critical time, where you're proving who you are. And you're you know, making your way in a professional way. Or you're dating and you're wanting to kind of meet you're wanting to meet somebody else and share your life with somebody. And not only is this interrupting that moment that feels developmentally right where you need to be, but it's also changing your body. And that's a part of that intimacy that just feels really at times insurmountable for newly diagnosed patients or even after treatment, how will I ever be able to talk about this or it a special moment be able to share myself with someone else that feels so like something that would be scary, are hard to do. And then your right fertility, I think that that's a significant difference and that women have certainly have options to preserve their fertility. And that's great. And I hope that that's happening in our cancer centers. But even so, that's not the way you dream about it. That's not the way you dream to have a baby, you know, you want to meet your husband and

19:08

go to dinner and

19:11

make love and have baby you don't want to stress with science involved. This is so there's loss. And there's grief in that too. Even if there's hope or there's an option on the horizon. That hurts and there's there's uncertainty in that like, Will it work? And even if it does work, will I be okay? Am I going to be okay, if I have a baby? Will my body be able to do this, my body has not been able to do other? I feel a sense of betrayal or failure my body by cancer. Does that begin to make me doubt my body's capacity to do this too. So I it's a lot so I just put a lot on the table. But I think all of that is wrapped into that adolescent young adult experience. Yeah, and I think that those are great points about young women in and again, in our world, we're talking women, but anybody with breast cancer at a young age, and especially when

20:00

You know, you you bring a conversation to a marriage and assume that a younger person is early in their marriage that you never thought you'd have. And that is there's a risk of recurrence, there is a risk that this cancer could come back and we're going to start a family and how are we are going to address that elephant in the room as unlikely as recurrence might be? It has to be a topic of conversation, when you're having children and planning a family. And I'm sure husbands have a equally if not more difficult time with this.

20:34

Yeah, there's a lot of different pieces to that fertility conversation, right, the recurrence of the unknown of the future. There's also the waiting, oh, my goodness, the waiting, not just the waiting of going through active treatment, and then five years plus, you know, tomorrow, tamoxifen or whatever that treatment is, but so much waiting when you're diagnosed, and this was what the next step was, this is where we were going by the next roof eight months. And now we're not doing that for five plus years. Holy cow. So that's just in all your friends are and you feel really out of sync. So that I think it makes it uniquely emotional. And I can throw another little curveball at this whole topic is that we don't really make women wait five years that you actually, under the right circumstance, you could take tamoxifen for a year and have a conversation about stopping therapy, to have a child now. You're stopping therapy. I mean, that has to have emotional baggage attached to it in and of itself, we have data that say it's safe to do it doesn't put you at any higher risk. But you got to wonder right, you got to wonder if maybe this isn't the right thing to do for my family, as much as the right thing to do for me because of God forbid if something should happen going forward.

21:54

A lot of big conversations I've had in my in my office, those those really come up in marriages, right, where one person in the couple is like, there is no way I'm letting you stop this treatment. No way. And then the woman is like, but this is something that I so desperately want for myself. And and that's hard in a marriage too. So it's a lot. Yeah, it's a it's great information. And we're fortunate in our practice. So there's a social worker that specializes in actually in cancer patients, she's to work in an oncology department at the hospital, who we send a lot of patients to for just these kinds of conversations. Because I mean, quite honestly, you know, I'm equipped to tell you about your treatment. But I'm really not equipped to

22:41

give you guidance in terms of coping with some of the emotional things that come along with the diagnosis, not the least of which is, you know, why did I do so? Well, but Mary Smith, who I saw every day for four weeks at radiation has a recurrence, like you said, so it's great, great information. Yeah. And that that is a, again, a great segue to, you know, what do you do with this feeling that bubbles up and I, I appreciate hearing that it does come up in your office and that women are talking about it or sharing it. And it is about finding where you can get the support that you need. The sometimes that comes from the therapist, the trusted, safe space of a therapy office where you can begin to talk talk through sometimes when you know, my office, there's a lot of things that happened in therapy, there's, you know, beginning to have self aware, cultivating and fine tuning self awareness, learning coping skills and strategies. But also, I often just watch when people are organically just talking and helping me to better understand them, they begin to loosen the knot of what's been so hard within themselves. And so just talking and expressing what's going on is often a relief. And that can happen with really close friends, too. So we're your trusted inner circle or a support group where others get it and we understand you. Great, great, thank you. Thank you so much, Julie. If our listeners want to find out a little bit more about you or your work, what would be the best way for them to do that. Oh, great. Well, thanks for asking. Right now I do have a website that people can find and learn a little bit about me. My website is Julie Larson. lcsw w Comm. You can also follow me on social media. Julie Larson lcsw W. And I recently did a TED talk. That is exciting. Great. And it is going to be published here for any day now. I'm waiting so and i will post that everywhere where I am online. So that will be coming out soon. And that would be great. You let us know because we'll definitely pull down our social media sites. Julie will be relevant. It's been a pleasure. Really, I thank you for taking the time to talk with us. survivor's guilt is a great topic that I don't think a lot of people know a lot about. So again, thank you for taking the time.

25:00

Again for those listening, the website WWW dot Julie Larson lc sw.com for more information about Julie Thank you, Julie again, and enjoy the rest of your evening. Thanks everyone for listening to the breast of everything podcast. I'm Dr. Eric brown of comprehensive breast care. We want to hear from you. So if you have a topic you'd like us to talk about, we welcome the suggestions just send them to compress care calm. That's comp breast care.com Thanks for tuning in. You've been listening to the breast of everything podcast with your host and board certified breast surgeon, Dr. Eric brown of comprehensive breast care. If you have a subject you would like the surgeons to discuss, please email your suggestions online at comp breast care. com. That's compbrstcare.com the doctors want to hear from you. The views thoughts and opinions shared in this podcast are intended for general education and informational purposes only and should not be substituted for medical advice, treatment or care from your physician or healthcare provider. Always consult your health care provider first.