How to Navigate Your Feelings When Newly Diagnosed with an Autoimmune Disease

Video Transcript

Todd “TJ” Keitz: Hi, everyone, and welcome to our collaborative series of conversations addressing the issues of autoimmune disease and women. I'm Todd Keitz from My Care Friends, and I'm joined today by my friends and colleagues Joyce Griggs of the United States of Healthcare and Katie Seymour of My Care Friends.

Today, our guest is Dr. Betsy Bennett, who will be talking with us about how to navigate your feelings when newly diagnosed with an autoimmune disease, as well as those who have longstanding experience living with the condition. Dr. Bennett is a clinical health psychologist and faculty at the University of North Carolina at Chapel Hill.

She lives with an autoimmune disease, has survived breast and lung cancer, and has spent her career helping patients navigate life with chronic illness. Welcome, Dr. Bennett.

Dr. Betsy Bennett: Thank you. Very happy to be here.

Todd “TJ” Keitz: We're happy to have you here. So let me jump right in with our questions. So.

Dr. Betsy Bennett: OK.

Todd “TJ” Keitz: Number one, what are some common emotional reactions that women may experience upon receiving a diagnosis of an autoimmune disease?

Dr. Betsy Bennett: Well, you know, like everything, you know, sort of, it depends, but I feel like we kind of have two categories. Typically, autoimmune diseases take a long time to diagnose. That's the, that's a very typical story. So but, you know, once, I mean, I could imagine there are times where it could be more sudden. And I feel like in the instances where it's a sudden, unexpected diagnosis, you know, the first thing you're going to be is shocked.

You know, it's just you're not ready for it. You weren't prepared. You know, how could this be all of those sorts of just having to wrap your mind around. Like, wait a minute. Like, I'm sick forever. What? You know, I, I, I didn't feel this way two months or whatever. I feel like that's probably less common than the, I've been having these weird symptoms that no one could make sense of for maybe months, years.

You know, some of these autoimmune diseases, I'm thinking of lupus, I know it's true for sarcoidosis, which is what I have, the average length to diagnosis is something like six years, eight years, something like that from the onset of symptoms. So many, many people, women with autoimmune diseases have spent years having symptoms that no one can make sense of. And oftentimes the unspoken, if not God forbid, directly spoken message is, it's in your head. Tough it out, you know, it's, it's, it's, come on, move on, you're fine.

So you finally get this diagnosis and it's this mix of relief like, Oh! I finally have a name for this. But then also dread, like, oh my God! It's X and I'm reading about X and it doesn't sound good.

I've talked to patients who have felt like actually the sense of relief even outweighs the sense of dread at first, because finally people believe me, finally people will listen to me, and that that is such a relief that sometimes that can carry you actually for a while.

But eventually the sense of, oh boy, now I have to live with this. Now I'm understanding that there's medication that can maybe help, but there's nothing that's going to cure. There's nothing that's going to bring me back to my old me. And that is a real grieving process, I think, to face that. That's a lot of hard emotional work.

Todd “TJ” Keitz: Absolutely. And to that point, the diagnosis being difficult and taking a long time, in autoimmune disease, it's in some ways so much more difficult than with other diseases because it presents in different ways that they may not think and they may not think to look deeper. And I speak from experience with my mom, where she probably, there's no doubt she had scleroderma for a long time, but however long that is, and for the year to two years prior to the diagnosis, it was put under a, what I call for lack of being, I'm not a doctor, but putting under the umbrella of PMR.

Dr. Betsy Bennett: Interesting. Yes.

Todd “TJ” Keitz: Rather than looking deeper. And then it took an acute episode. And to this question, the emotional reaction. It was a, it was a journey because she crashed. So you know, there's so many ways. It's such a, such a difficult topic.

Dr. Betsy Bennett: Yeah, yeah, it really is. And, and it's so important when you are the patient in that situation or supporting someone in that situation to try to wrap your mind around whatever I'm feeling right now is not going to last forever.

You know, it feels like it, but it's not going to last forever. At some point, you are going to become accustomed to, and perhaps even love, the new you that you are. But that takes time.

Katie Seymour: That's a great segue into the next question we have, actually, which is what are some effective coping strategies for managing the emotional component of the diagnosis?

Dr. Betsy Bennett: I have a video on this, although not, it has to do with what to do when you are, um, waiting for test results to come back. But it's the same, it's the same set of skills, actually, where basically the most important thing that you can do is feel your emotions. And allow yourself to really feel them.

And if that means that you're sobbing in your room alone for a bit, that's what you're doing. If it means you're kicking something, if you're up to that, you're doing that. But whatever it is that you just let yourself, even if it's just, you know, really, really strong emotions. They need not last long, just be to let that wash over you. If it's just two minutes, just to allow yourself, allow your body to have that experience. And then, once you've done that, to do some other things to take care of yourself. Distracting yourself, totally fine. Find something to do to distract yourself. One of the ways that some people find helpful to distract themselves of things like, you know, if they're, you know, a movie, a mystery, or a puzzle, or something like that, if they're not up to that.

Sometimes, believe it or not, just listening to someone else's problem can get your mind off your own and I don't at all mean that in a way that I don't mean it at all in that prissy kind of like, well, you should think about what other people are going through. I mean it in sense of like, it's a good distraction, just like your body and brain, you need a break from thinking about whatever it is you're going through. If you can listen to someone else's trouble. Two thumbs up.

Also, another important skill is just to to do things that nurture yourself. So, you know, one of the things that I've been really interested in lately is the idea of creativity as as an answer to suffering. What is it that you could do that is creative? Whether it's maybe Singing a song or making, in my case, a very lousy painting or writing a poem or whatever it might be, doing needlework, as we know, there are a million ways to be creative. Is there something, even if your body is really suffering, something that you can do to express yourself basically in a creative way. That's a wonderful way to to nurture yourself. 

And then, of course, the idea of expressing yourself either through talking with someone who's a trusted listener or journaling. Something where you can just let it out and honestly express how you feel, you know, in this moment.

Joyce Griggs: Yeah. And can you talk a little bit about like, self compassion, you know, in, in this context too, as a, as a coping strategy?

Dr. Betsy Bennett: Yeah. You know, self compassion is so, so, so important because, here's the thing. We've all had the flu, right? We've all probably had the experience of a really bad flu. And if you've ever noticed when you have the flu, you are not happy. You are not happy. And the reason that you are not happy is that your body is sick and your brain is part of your body. Right? So how foolish it would be for us to expect that we're going to have happy brains when our bodies are sick. And yet, if you have an autoimmune disease, do we want to just give up and say, Well, my body's sick and my brain's kind of going along with it. I guess I'm going to be miserable for the rest of my life. No, we're not. We're not doing that.

So, we start out with compassion and understanding for ourselves that like, Of course my mood is black. My body is sick. I cannot expect anything else. But, I am a smart person. And I want to outsmart this body of mine. And I want to take what I can control, maybe the things that I'm thinking about, the ways that I'm occupying my mind, to trick my brain into being in a better place, even though my body really isn't.

And that's all about gently coaching yourself, not scolding yourself, and just treating yourself as you would a beloved friend, or even I think of, like, the way that we treat our beloved animals when they're sick. You know, treat yourself the same way. And it's gonna go, it's hard because we're used to this sort of, you know, more than nudging, prodding ourselves, do this, do that, be productive, be this, be that.

And, you know, to, to practice kind of letting go of that. I don't have to be anything other than what I am right now. And you know, in the words of Barbie, you know, you work enough, but, you know, particularly when you're sick, you know, you have to embrace that. So.

Todd “TJ” Keitz: Yeah, that really dovetails into the next question I was going to ask. It touched on a lot of that, but I'll take it up just a slight bit further. So how can women strike that balance between acknowledging and processing their feelings about the diagnosis, yet at the same time, taking practical steps to manage their health?

Dr. Betsy Bennett: Yeah, man, that is so tough because one of the main things that patients tell me, and I experienced this myself, so I totally get it, is, you know, I can go on and on about how helpful it is to experience your negative emotions. But for those of us who don't really like that, please don't make me, it's the core issue is you don't want to circle the drain.

You know, the fear is that when you get in touch with that, you won't climb out of it. And actually, the reverse is true. If you don't allow yourself to experience it, it will be a monkey on your back and a very smelly, violent monkey, very unpleasant monkey, all day long, every day. And so part of, part of the work with compassion is also trusting yourself that like, hey, if I allow myself to feel as crappy as I feel and just go with it. Well, say I can't get out of it. Say, I'm just, you know, I've lost it. You know, sort of imagining that. Who in my life would pull me out? Oh, hey, wait, I have some people who would pull me out. I have some people who would say, "Like it or not, we're watching your favorite rom com. Start now." You know, whatever it might be that would pull you out.

And if you feel like that's work that you would benefit from, to let yourself feel the sadness and the grief, it's perfectly okay and might even be a good idea to say to some of the primary people who support you, "Hey, you know what? I'm working on this. And I'm really afraid that I might get to a place where I can't pull myself out of it. Can I call on you?"

And the person who loves you and supports you is going to say, "Hell yeah, you can. Let's think about what we can do to pull you out of it if you feel like you, you, you get so down that it just feels insurmountable." And of course, that kind of gets to the point of when to seek professional help and all that. But I know that wasn't exactly where you were going, but that's an important part of the toolkit as well.

Katie Seymour: Yeah, I'd love to. I love that. Thank you. I think that's so important to, to acknowledge and it is hard. I'm, I too am, I don't love to sit in that space.

Dr. Betsy Bennett: Oh, me either, man. I would sooner take out a hangnail. I, you know. Sorry. Bad analogy. But true.

Katie Seymour: But I'd love to talk about the women who have had long standing experience living with autoimmune. And I know we've talked about the recently diagnosed, but what does it look like and, and in terms of the importance for women to seek support from friends, family, mental health professionals during this time? And I'd love to hear some potential benefits.

Dr. Betsy Bennett: Yeah, I mean, I, I mean, obviously, you know, your own support system, like we've talked about, is so important. But, you know, there is definitely a place for professional help. You know, one of the things that is very, very common in autoimmune disease is, you know, an increased prevalence of anxiety disorders and depressive disorders.

And, and different autoimmune diseases have different kind of pictures. For some, anxiety is more common and for some depression, sometimes a mix, but honestly the prevalence numbers really don't mean anything to you as an individual. What's important to know is that it can happen and it's not a weakness on your part. It can just happen. You know, mental health is health. Mental illness is illness. And so, again, should it be shocking to us when, you know, we've got all these cytokines and who knows what else, you know, you know, eating up our bodies, so to speak, are we really going to think that our brain is somehow going to be immune?

And there are also these well-documented cycles between like, an inability to sleep well, and then exacerbation of symptoms, and then the onset of depression, and then all those things and pain, they, you know, they make it worse, and there's this, this bad cycle. So, a couple things to know. Always a great idea to start with whoever kind of your main provider is, to get some recommendations for like, who, well, first of all, do I, you know, do we think that I need to start a medication and what would sort of the pros and cons of that be? And do my do my symptoms warrant that? And so that's a big and important discussion. But then also, who could the provider recommend for, for really counseling or psychotherapy services either in addition to, or if the, if your doctor doesn't feel like it's time to start medication to kind of kickstart addressing the, the mental health side of this.

And I say, start with your doctor because you do not want to go on the internet and find someone because the, the chances that that person will really understand how to work with someone with a chronic illness, it's just not, it's not very great. I mean, I think about, you know, one of the most studied psychotherapy techniques or ways of viewing psychotherapy, of course, is cognitive behavioral therapy. We've all heard that a bajillion times.

Well, cognitive behavioral therapy can be effective for people with chronic illnesses, but it has to be modified significantly. I mean, significantly. So someone really needs to know what they're doing. If you were to go to a CBT therapist with the symptoms of scleroderma, for instance, and listen, and living with that, and that person doesn't know how to modify the technique, you know, you'd be getting, it would feel unsupportive, honestly. It would feel very unsupportive. Well, you know, what are your thoughts about, you know, such and such? It's like, no, I'm in pain. You know? And not to say that thoughts can't make pain worse. They can.

But, but you need a therapist who understands how to help you work with, for instance, the pain you're living with. Or whatever other symptom that you're having.

And one other thing about that, this is another thing, we could do a whole session on, like, how to find a therapist who is qualified and can help you. That's a whole, that's a whole other topic. But real quick, it's totally normal to visit 2 3 people before you find someone that you, that you click with. Do not expect the first therapist that you meet with to be like, Wow, I, I connect with this person and what they're saying resonates. It could happen. But it probably won't. So you need to be prepared to kind of do a little, do a little shopping because what we call, you know, the sort of fancy term for it is the "therapeutic alliance." The therapeutic alliance is unique to the therapist and the patient. There needs to be that magic. And if it's not there, it's probably not going to be that helpful for you.

Todd “TJ” Keitz: I wanna jump in here for a second about finding that person. And I don't know how prevalent this is, and, and, and perhaps you can shed some light. So, with my mom's situation, she ended up being contacted and I ended up being contacted by a chronic care manager at Cleveland Clinic. Now, I, I know there are other healthcare facilities that, systems that have that person. And I, I say this to everybody that I talk to that's dealing with stuff, and they say, well, my, my loved one really could benefit. I asked a little bit about it. I said, have you checked with your provider, your healthcare system? Because they have a roster of people who deal with different diseases, who understand. Um, and then I take it a step further. If you do not find that they have a chronic care manager, check with your local civic organizations that may have it. It could be Catholic family services, Jewish family, children's services, et cetera. They often have social workers who do help in that way.

Dr. Betsy Bennett: Yeah, yeah. And nurse navigators are another profession where they can, they can, you know, help get you steered to the place so that you're, you know, you're, you're, you're going to, you're going to end up talking with someone who knows what it means to work with someone who's living with typically a bevy of physical symptoms every day. Yeah.

Todd “TJ” Keitz: Absolutely.

Dr. Betsy Bennett: Really true.

Joyce Griggs: Important information. So can we talk about maybe you touched on anxiety and anxiety being something that is something that's going to need to be managed for probably a lot of people who are living with autoimmune disease. What maybe are there some techniques that you can talk to us about like in terms of like, you know, the day to day challenges of living with one of these conditions?

Dr. Betsy Bennett: Yeah, you know, there are so many good ways to manage sort of the physical symptoms of anxiety. And again, I, and not, I just want to be careful that, that I make it clear that if you, someone listening to this right now, feels like, I'm, I'm overwhelmed with my anxiety symptoms, you, you, you know, you deserve help. You should just get it. It's not a weakness. You should get help because sometimes you can't make use of the personal techniques they'll talk about in a second, or even psychotherapy, until you have a medication on board that's just bringing down that overall activation. And if you need that. And if you can't, you just can't get yourself sorted, definitely talk to your doctor.

Now, if you're in a place where you're not quite there, you find like, yeah, some days I seem to have a lot of anxiety, some days I don't, or I'll find it, it hits me at certain times of the day, and then maybe not others. Well, that way you might be more in a place then where it's worth a try to manage those symptoms on your own. Again, realizing that professional help is there for you if you get to that point.

But some of those things might be progressive relaxation. If you just Google that or put it into, you know, YouTube, you'll find all sorts of guided muscle relaxation that can be just, oh, you know, a wonderful way for you to sort of relax your body.

There are protocols that have, you know, good empirical support, like the physiological sigh, I don't know if you all have heard of that, but it's when you take a very deep breath and then sort of like one sort of almost like a little last gasp, and then you let it out very, very slowly. Just doing that several times. Very, very helpful.

Again, creative endeavors. You know, do you have a coloring book? Could you put on some, one of my favorite things is if you search YouTube for like music for studying and con and, and concentration, you get these like, really sort of, you know, kind of like, you can get ones that sound more upbeat, you can get ones that sound a little more moody, you can pick what sort of mood you want, and you can sit there and color in a coloring book.

You know, any of these things that would allow you to just, you know, and if you feel up to it, time in nature. If you can even do a five-minute walk or sitting outside, if you're not up to walking, can be another thing that can really be sort of calming to your overall nervous system. A warm bath. You know, anything, anything that feels good to you can just be a wonderful way to nurture yourself and to bring your body down from that heightened that we all know and dislike.

Joyce Griggs: Those are great.

Todd “TJ” Keitz: Those are great. Here's a big question for you.

Dr. Betsy Bennett: Okay.

Todd “TJ” Keitz: It's, yeah, it's a difficult question. How can women maintain, you know, a sense of empowerment and an agency in managing their health and well-being despite the challenges that are posed, you know, by living with an autoimmune condition?

Dr. Betsy Bennett: I think that the answer to that is less about what you do and more about understanding who you are. And you know, who you are is, well, I'd put an expletive, but this is a family show. Awesome. That's who you are. And no matter what doctor might be gaslighting you, no matter what relationship maybe you're having to grieve because that person can't handle your illness, no matter what is swirling around you, you are awesome.

And getting in touch with that, that's your power. This disease might be ravaging me. I'm not the first person, nor will I be the last to suffer. And if other people can do it, I can too. I am awesome. And I know there are people in the audience who are like, Oh, that reminds me of the Saturday Night Live thing. And I don't mean to be, now I'm probably aging myself to where the guy looks in the mirror and he says, you know, I'm not asking you to do that. I'm asking you to understand that you have absolute worth as a human being. You were created for a reason. And here you are, and you deserve love and compassion.

Todd “TJ” Keitz: Do you have any practical tips for women to be able to do that? Because in theory, you know, they're, they could be listening. Oh, yeah, that's great. But how do I do that?

Dr. Betsy Bennett: There's this wonderful, wonderful woman whose book I read and devoured. And now I read her on Substack. Her name is Suleika Jaouad. Many of you are aware of her. She is a young woman who was diagnosed with a very serious form of blood cancer when she was in her early 20s. She wrote a column for the New York Times and then went on to write a book. And she, I cannot remember. She recommended this in, in a, in a recent Substack essay that she wrote. And it was not her idea. She credited someone else with it. And I can't remember who it, who it was. So I apologize, but I'm definitely crediting Suleika. And it's a journaling technique where the question is, "Love, what would you have me know today?" So the question is sort of like for, for someone who, who loves you beyond all reason, what would that person like you to know today? And to write that out. So maybe it's it's I'm more than my pain. I'm more than my rash. I'm more than my cough, whatever. Maybe it's, you know, I'm not a burden to the people I love. They're happy to have me here. Whatever it is, whatever you think the all-loving presence in the world wants you to know right now, you write that down.

And that's a very, very powerful way, I think, to get in touch with sort of the you that's beyond the illness.

So that would be my practical tip.

Katie Seymour: Yeah. So as we're kind of wrapping up this conversation, we've, you've shared some amazing strategies. I'm curious though, do you have any insight or resources available that you know of that you could share with the audience for women who may be struggling to really accept this new reality and, you know, and just adjust their life with the autoimmune condition?

Dr. Betsy Bennett: Yeah, you know, I will give you all a link to, um, to, I, I was, because I was just talking about her, Suleika Jaouad's Substack. My understanding is that, that she has sort of two things that she's offered. There's something that you can pay for where you're kind of part of a group and you can talk about these things with other, other folks who follow her. But she also has a free newsletter and she sends an essay, I want to say it's once a week, and every single time I read this woman's work, I am inspired. She knows what it is to be sick. Her leukemia has relapsed, and she's living now in this forever land of chemotherapy, you know, probably for the rest of her life. And she writes very, very eloquently about, about it. And it's very, very, very helpful.

Katie Seymour: That's great.

Dr. Betsy Bennett: And then certainly I should say this too, for anyone who's not already plugged into some sort of a support system with other people who have chronic illnesses, that probably should have been the first thing that I said.

And, you know, that's a bit of a two-edged sword because sometimes you go into your groups where you're going to be, and it can be frightening to see what other people are, are living with. So I understand that that's a, and, and I think that that's perhaps a benefit of going in the direction of someone like Miss Jaouad who just writes about this broadly and helps you think about your health in a different way and in yourself in part of that system. But certainly there's nothing quite like being able to say to a group in person or going online and being like, "Oh, I've had another relapse" and have people who really get it be able to say, "Oh, my God, I'm so sorry." So maybe a mix of the specific and the general would be my advice.

Joyce Griggs: Really great advice.

Katie Seymour: Well, we appreciate you so much, Dr. Bennett, for coming, sharing your tips and experiences. This has been such a lovely conversation. Is there anything else you would like to add?

Dr. Betsy Bennett: No, just I would say to the audience, man, just hang in there, you know. You can do this and particularly to people who are new to the, to whatever disease they have, or maybe are adjusting to a worsening of their symptoms, to really believe in the adaptability of yourself and your body.

You might think that you can never have another happy day in your life living with whatever this is, but I promise you, you will. You will get used to whatever it is because humans are endlessly adaptable and, um, you know, you got this. That's what I would say. You got this.

Katie Seymour: Love that. Thank you so much.

Dr. Betsy Bennett: Thank you.

Todd “TJ” Keitz: Thank you so much. It was a pleasure to have you here. Incredibly informative. And, you know, we're just incredibly grateful. Thank you.

Dr. Betsy Bennett: Oh, I'm so glad. This was fun. Thanks.