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When we’re diagnosed with a chronic illness, no one talks about how we go through a bit of an identity crisis. How do we reconcile that? How do we create an identity that’s not centered around our illness, yet is different than before because we now have a diagnosis?
I explore these questions in a fascinating discussion with Dr. Morgan April Morley about what makes up our self concept. Diagnosed with Lupus, she had to deal with unique circumstances that affected how she looked at herself and her own identity. Then she decided to research the phenomenon as it relates to all people living with a diagnosis. She talks about why she wears heels when she has a flare, and the surprising reason why relationships are so impacted by a diagnosis. Dr. Morley also shares a brilliant therapeutic technique called identity mapping exercise with us to help us get started on creating a new, empowering identity that truly fits us.
Guest Spotlight: Dr. Morgan April Morley
Dr. April Morley is a professor of Communication Studies who researches how our identity affects and reflects our health and well-being. Most recently, her research has been focused on the multiple ways individuals’ identities change after chronic illness diagnosis and how those changes impact psychological well-being and treatment adherence. Her research has been presented at national conferences and published in peer-reviewed scholarly journals. Beyond her research, she has taught interpersonal communication, health communication, and research methods at the University of Nebraska-Lincoln and is looking forward to teaching similar courses at California State University, Sacramento in Fall.
Dr. April Morley found her passion for understanding and giving voice to those with chronic illness because of her struggle accepting her Lupus identity. At 19 years old she was diagnosed with Lupus but for many years she felt as though accepting this identity would negatively affect her career and family goals. Through her research, her support-networks, and social media support groups, she has come to understand that living with a chronic illness is both positive and negative. Now Dr. April Morley seeks to explain chronic illness research and her experience to help doctors, patients, and support-networks understand the nuanced ways chronic illness impacts life.
Check out her Chronic Illness Support Group for Young Adults on Facebook or her recent Instagram venture https://www.instagram.com/chronicallymo/
Connect with Dr. Morgan April Morley:
- Instagram: https://www.instagram.com/acall2action80/
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NOTE: This podcast was transcribed by an AI tool. Please forgive any typos or errors.
Dr. Morgan April Morley
Welcome to the live your life, not your diagnosis podcast. I'm Andrea Hanson, author, motivational speaker. And master certified coach. When I was diagnosed with multiple sclerosis, I was told. I would never reach my goals. But I did. And I'm on a mission to prove that life with a chronic illness can still be expansive and quite remarkable.
Everyone has their own unique path. I'm talking to people, living with a chronic illness that come from different backgrounds, have different points of view and are achieving amazing life goals of all kinds. Do you inspire you? To achieve what you thought was impossible. These stories are raw. Uncensored and judgment free.
This means that there may be some adult language sensitive topics and
possible triggers for listeners. Listener discretion is advised
[00:00:48] Andrea: I am sitting here with Dr. Morgan, April Morley, and she is a professor of communication studies who researches how our identity affects and reflects our health and wellbeing. Most recently, her research has been focused on the multiple ways individuals, identities change after chronic illness diagnosis and how those changes impact psychological wellbeing and treatment adherence.
Her research has been presented at national conferences and published in peer reviewed scholarly journals. Beyond her research. She has taught interpersonal communication, health communication, and research methods at the university of Nebraska Lincoln, and is looking forward to teaching similar courses at California state university Sacramento in the fall, Dr.
April Morley founded her passion for understanding and giving voice to those with chronic illness because of her struggle accepting her lupus identity. At 19 years old, she was diagnosed with lupus, but for many years, she felt as though accepting this identity would negatively affect her career and family goals through her research, her support networks and social media support groups.
She has come to understand that living with chronic illness is both positive and negative. Now Dr. April Morley seeks to explain chronic illness research and her experience to help doctors, patients, and support networks understand the nuanced ways chronic illness impacts your life. You can check out her chronic illness support group for young adults on Facebook or her recent Instagram venture at chronically Mo. Hi Morgan. How
[00:02:30] Morgan: I'm really great. I'm so excited.
[00:02:32] Andrea: I'm excited because we are going to have such a juicy conversation. We were talking before the podcast about how, what we do is very similar. You're researching it, which I can't wait to hear about all of that. And when I was working with people who were mostly newly diagnosed with multiple sclerosis as a mindset coach, I went in thinking I was going to help them with their career or how to write, uh, a letter to their boss about accommodations.
And I very quickly realized that what they needed help with was who they are now that they've been diagnosed with. MS. And you did something very similar.
[00:03:18] Morgan: Yeah. So
basically, I studied communication at my undergrad at KU and I kind of liked communication. Didn't really understand where I was going to take it. But at that same time, I was getting diagnosed with the chronic illness when I was in my, um, sophomore, freshman or sophomore year of college. And I just really wouldn't take the medicine.
I wouldn't adhere to any of the treatments. It was just not for me. I was this wreck. I knew no one in college. I wreck who I'm going to'.
So, I tried that for a while. All the way until I came into my PhD program, when I was, I'm guessing 24, I guess. And it was actually the, the colleagues here that were like, hey, you can, totally be yourself with your lupus identity. And if you don't want to, if you can't come to class one day, because you're having a flare up, that’s cool too.
We'll just help you out. And I was, whoa, people are actually understanding of this. Maybe there's something that I should be studying with this. I love methods. I love research method, this and stuff. maybe I have a unique niche in what I want to do that is to give voice these individuals, chronic illness that actually help them understand how their identities are changing.
Once they get diagnosed.
[00:04:28] Andrea: right. It's something that is not talked about. I know for me when I was diagnosed with MS. They talked about what MS was. I had a nurse. Come in and tell me all the things that I could no longer do, which is a whole other thing. Right. Because I was like, who are you to tell me that?
But I, all of the things right. Talked about treatment, talked about all the kind of stuff. What they didn't talk about was emotions, not clinical, psychological stuff, but just emotions I think they wrap it up in this whole,
this is your new normal kind of a discussion, which I don't know about you, but I
hate that term. Yeah. Because it, to me, it totally just brushes off the fact that life is changing all the time and there really is no normal. And if you think you're going to have a normal, you're going to be fighting change the entire way. But they don't talk about it. They don't talk about, Hey, you're different now.
And it's not that you're different now because you have different things going on. you're, you're different, psychologically on the inside because this whole thing has been forced on you. And it's so much deeper than just emotions and your new normal
[00:05:48] Morgan: Hundred percent. So, when we look, so I just finished my dissertation and one of the big claims I make is we typically function in Western society for a biomedical model or what we call a biomedical approach, which is this idea that we it's really fitting for acute illnesses.
Right. I broke my arm or I have the flu, right. So, it's this idea that we want to find the biological cause to what's going on in the body and we want to cure it. And that is how Western medicine is largely set up. But that model doesn't really work quite well for chronic illnesses.
Because a lot of times it's difficult to pinpoint the exact cause of whatever the chronic illness symptoms we're experiencing are, you know, diagnostic journeys are difficult. But even beyond that, you can't cure it. So our, our model just really doesn't work for that. And it doesn't really take into account the experience, the lifelong experience of chronic illness.
you're saying, they’re like, well, this is the things you can't do. So you’re telling me I can't run for the rest of my life. what, how what if I want to run.
[00:06:44] Andrea: right. Yeah. Which I was going to say, which by the way is often not true. I can't tell you how many people and you probably have too. I talked to who, when they're diagnosed, especially they're told to, just put your feet up or don’t, for me, it was, you can no longer take hot showers. And I was like, no, that's ridiculous.
Like, I took one
last night. I don't know what you're talking about.
[00:07:05] Morgan: Yeah.
[00:07:08] Andrea: we're fine.
[00:07:09] Morgan: it's so true. It's it's a deficit model, saying the things we can't do. And that is really problematic. Both for financial reasons, right? Saying well, you can't work. Right. But also for psychological reasons, what, what does my life now exist of? And are these dreams just suddenly and very very suddenly most of the time, just.
Dropped away. These things that I've always wanted and desired, and our physicians largely are not taking that into account when they give us a diagnosis. And so, we're just on our journey of what does this for our identity. What does this self-concept?
[00:07:42] Andrea: Especially I think when you're young, chronic illness aside.
I'm just figuring
out who I am in this world. And now I've got all of this stuff and I’m, I'm not not going to not date.
I've always wanted to get married. I'm not going to not get married.
[00:07:56] Morgan: Uhhuh. That's. so funny, you mention dating and stuff Because that's something that I kind of want to take my research at kind of moving forward a little bit more is because I had a relationship at the time that I was diagnosed and it was pretty good relationship, but he just did not understand me being tired and not able to go out and do things.
And now I had I no longer was suppressing my fatigue. I had been prior to diagnosis now I had an answer for what it was and that it definitely was part of the demolishing of that relationship.
[00:08:23] Andrea: Yeah. Yeah. I think that when I look at my now husband, he didn't know me before I was diagnosed. he, he never met the pre-MS. Andrea. And I think on some level that's actually a good thing because he's not, he's not comparing me to how I used to be. And he's just a hundred percent accepting.
I was, I know some people it's, it's always a question of, when do you tell people what's going on? I was always very upfront Because I'm just always, I'm just an open person. And so, I was always very upfront.
[00:08:57] Morgan: Yeah. So that
kinda speaks to
take this from real life onto research, to I’ve actually found that our relational identity is what shifts the most. So that makes sense. Kind of what you're saying is in my research, I've seen that these relationships and they're when you had a relationship prior to diagnosis, you're experiencing the biggest shifts in your identity, in your relationship, and those are the most impactful on your psychological wellbeing.
So exactly what you're saying is it may be advantageous for people that are in serious relationships at the time of diagnosis that are then being compared to this kind old identity to actually get out of those at times, and maybe move to new relationships where this is just really are from the get go.
[00:09:34] Andrea: I feel for me, I had a lot of comparison myself, just gosh, I used to be able to do this and I wasn't, I mean, I think I was a lot, you were, I, I wasn't, it's not I was in denial, but I was just , I'm going to continue doing what I do. You know, I love to run.
I started practicing martial arts. I did all sorts of stuff. So I was, this is not going to let me, or this is not going to make me change what I want to do. But at the same time, there is in the back of your head, this little comparison of
you didn't used to get so tired, you didn't need to take a beat you do now.
And what does that mean? And what is that going to mean for 30, 40, 50 years from now? oh gosh, that fear of the fear of what's to come
[00:10:20] Morgan: and the uncertainty there's such high uncertainty involved what is this next, 40, 50 years. It's what does it look to have kids? And I mean, I still have that fear. I don't know about you, but I, I fear that often still. And I think for me, when I'm reading my participants' responses, I do some open-end ended questions where they lay out their fears on what's going on in their lives.
And I it's briefly scary for me when I'm reading someone that taps into those same spheres of am I going to be able to get married and have a kid? I need that stability financially in case, I have a flare and I can't work, but can I do that? Is that fair to that partner for me to do that.
And, when I'm reading those things, wow, that really taps into how I feel.
[00:10:58] Andrea: Yeah. It's a big lesson in, when it comes to mindset coaching, I call it staying out of the pool. So, you don't want to get in the pool
with a client or someone that you're working with, or if you're reading responses, you want to stay out of it. And it's, I found it to be really freeing, but also it, sometimes it could just take a lot of energy to separate myself.
And listen to what they're going through, because when I'm coaching people, it's all about them and what's going on. And I have to take all of my fears and everything that I think about my MS or MS in general or anything that.
And I need to, I don't want to say compartmentalize because I feel that’s such a, that word has such a bad rap, but you are kind of compartmentalizing it for a second and really
just separating yourself. And I find
that, that's helpful, but it also takes a lot of energy
[00:11:51] Morgan: I think that maybe in some of the word compartmentalize, I think maybe it's more minimized because I think that what makes you so good when you're talking to those clients that are experiencing MS or other chronic illnesses, is that it is still a part of you, right?
As much as you can minimize that identity, your MS is still part of your, and that's a superpower for what you do. Right. So, I think that's super cool.
[00:12:16] Andrea: Yeah. Because it is. I mean, even though I am the first to tell you, I am not MS. I am not my, illness or anything that. It, it comes back to that idea of identity. MS. Is very much a part of my identity because I've now had it for over half my life and I mean, just slightly, I'm not that old, slightly over half my life
but technically Yeah.
and so I was like, wow, this really is something that's baked in. So, walk me back when you were first diagnosed, your formation of your new
[00:12:51] Morgan: It wasn't good. It was, .
It was pretty tumultuous it was just I basically this diagnosis I got at the university health center, which, they don't really specialize in people with chronic illnesses. Right? So, he looked at my thing and was, hey, we can't see you here anymore.
And I was like, what do you mean? I don't, I'm not from this area. I don't, what do you mean? And he's like, you need to be referred to rheumatologist. And at that time, when, it was when insurance, if you had a preexisting condition, you could be denied from other insurances,
and so for those getting diagnosed, I was literally told Hey, you have lupus, we're never going to write that down on a piece of paper. And I was like, so do I have lupus? for a long time, I was like, do I actually, maybe I don't. And I think that actually led to me that adhering to treatment and not really accepting any part of that identity, Because it was like, we don't want to put it on there because we know we're going to be changing insurance.
It's we don't want you to be denied. Which is was the smart choice, I guess for my doctor. But for my identity was a really detrimental part of my journey to be , is this what I have this not what I have. And I was getting medicine prescribed to me that was for lupus, but under disguises of other conditions so that they didn't put lupus on there.
[00:13:51] Andrea: which is just a, kind of a mind screw to begin with. Because now it's you have a secret or you have something that you can't talk about because I remember those insurance forms and if one form at one insurance match exactly
[00:14:04] Morgan: Mm-hmm
[00:14:05] Andrea: that you were doing on the
[00:14:07] Morgan: from physician to physician. Right. So you go to your physician, you're , do you have preexisting conditions? Well, off record. Yes. I, it was, it was really scary. And then, so I didn't really accept anything until I really came to Nebraska, which is where I'm at right now for my finishing my PhD.
And I found a doctor here and she really dove into what my tests were and stuff that. And I straight up asked her. Cause at that time, the preexisting condition thing had already been removed and part of insurances. And I was , I was , listen, I need to know I need you to tell me, you have lupus.
She's I can tell you with a hundred percent confidence you have lupus. I think it was from that moment. And then with the support of the people here that I was able to finally start to accept my illness identity, but I will make no claiMS that I have fully accepted this illness identity in any way, shape or form.
I think there's this really foundational article that I have, my students read the stuff that talks about an IBS journey and how you look and how you dress is a mask for IBS. I
will send it to you. It's super fascinating.
Yes, Oh, it's one of the
best. And I've been on a panel with this, the woman that wrote it and she's just, it's really beautiful. Just it's and it's very, not research. It's very ties in research, but it's also very valuable, but it's just this how we dress can be a way to chronic more invisible. And I fully recognize that to myself.
If I'm having a flare up, I will fully, I'm going to be in heels. That sounds ridiculous, but I'm going to stomp into my classroom in heels. Cause that's the way that I can feel some sense of control or
agency. So I think that, what is true acceptance of your illness identity?
I, I can't say, and I don't think they're, I mean, they're, which is an, an older scholar would say it's full acceptance. I'm not sure that that really is where intrudes to all of your parts of your life. And I, I don't know this, so this is part of my research that I fight against it. I don't think that that being your primary identity is necessarily best.
And maybe for some, I'm not in the business of making prescriptions of things, but I don't know. So I think that I'm at the point where. It is definitely part of my identity, but it's not the primary part. And oftentimes, I disguise it and I'm, for better or for worse
[00:16:19] Andrea: Everybody has a different idea of this and everybody looks at it differently. Having said that I, 100% do not look at MS as being my primary identity in any way. There are, long periods of time where I don't even talk about it. . That was one of the things when I was starting this podcast on one end, I was , look, I see this need to share stories of people you that are doing this
amazing stuff while living with a chronic illness.
Cause I feel that's not highlighted enough. And then I thought,
you know, what do I want to talk about this all the time? Because it's not, this is not who I am. And then I had to, I had to reconcile the fact that again, it's that minimizing it right on my end. It's I had to reconcile that just because I'm talking to people and highlighting it and
[00:17:06] Morgan: Oh my gosh. Mm-hmm mm-hmm
[00:17:06] Andrea: being this advocate of people with chronic illness still does not make my primary identity
[00:17:12] Morgan: Hundred percent. This is in my research, what I see a lot of times and we call them identity gaps and they're called personal and enacted identity gap. So how you talk about yourself, how you feel about yourself when they're feeling discrepant can create tensions and it can kind of have this negative effect on your psychological wellbeing.
It's super common in individuals with chronic illness because it's we're constantly balancing these things. And then how people don't have tensions is they maybe do create a chronic identity that is their salient, most salient identity, their most impactful identity throughout all contexts. But for me, when I've met people where that is their primary thing, as someone with chronic illness, I actually find myself not really enjoying that.
I don't need to talk about my chronic illness all the time. And so I, when you, when you're talking about this podcast I felt the same way when I started my Instagram, chronically Mo I was just, you'll see, when you look at it there is not, there's been a few posts, but then I kind of find myself every day, am I supposed to get up and make a post?
It just feels
it almost feels inauthentic cause that's not how I'm living my life.
[00:18:13] Andrea: hundred. yeah.
It, it does. Yeah. It makes you feel , because you're not living your life that way. You're not
[00:18:21] Morgan: Mm-hmm
[00:18:22] Andrea: doing it justice in some way, or somehow, I said earlier, you're in denial and I was , I don't think I'm in denial. I mean, I don't know what the textbook
definition of a denial is, but I don't think so, but I still don't talk.
I don't, you know, hi, nice to meet you. I'm Andrea Hanson, I have MS. I'm a MS
[00:18:38] Morgan: It's
so true. We're kind of left out of the conversation. And what I mean by that is the people that don't accept it at all, they're kind of in the conversation.
And then the people that go so far and it's everything about them. They're definitely in the conversation, but it seems to be all people that aren't.
And , I think that there's a real, a real gap in how we talk and how we learn about chronic illness that doesn't allow for this liminal state and actually persuades us not to have
[00:19:06] Andrea: I think that's really interesting Because I think a lot of people, when they are diagnosed, it's
you want to find out about it, right? I mean, you want to know what is this? Because quite often, what has led to the diagnosis is sometimes years of your body. Nuts. And so you want to find out everything you can. And so you're researching and you're talking to other people with it and you're talking to your doctors and your nurses.
And so what are you doing? You're having these major conversations all the time about you having this diagnosis and you having this illness. And it, it's a bubble that you can very quickly get into and think that that is all it is. And again, that's why I love doing this, Because you're hearing from people and saying , Hey yes, you can talk about it and you can own it.
And it can be part of your identity. And it does not mean you're in denial that you can step outta that bubble and you can still go do amazing things.
[00:20:06] Morgan: Can I tell you, can I just plug this fun fact and this research study, it's not even published yet. Okay. so I, this research study, I just finished and it's I'm I was so excited about it. When I found this finding 10 years, 10 years is the time that it actually takes to have your identity affect these treatment adherence, wellbeing outcome, stuff that.
What I asked myself when I found this, so I have 400, so participants I'm running data on this and I find this and I there asked someone chronic should explain this. And I, what about 10 years is this magical point in our identity that , has all these profound effects on our wellbeing?
And I need to add some more things. I need to do more research at this point. But I just kept thinking that it's at some point you, you start getting into this level of, and I don't really the word acceptance, but stability, stability may be and who, who your chronic illness is within you and how that measures out against all these other identities that are part of us.
There becomes a level of stability at 10 years. But then my question is, is how can we make that stability before 10 years?
[00:21:10] Andrea: Ugh.
I love that. When you say that, and I don't know about the 10 year mark, but one thing that came up for me is I know for me a big thing that helped me and I'm with you, it's not necessarily accept it Because it wasn't that I wasn't accepting it, but it made me come to that feeling of stability I had to get to the point where I no longer feared the future, which is something that we were talking about earlier and I had to, and it wasn't that I was thinking everything was fine.
And it's all going to be great. Forget it. Just think positive thoughts. No, no, no. It's just that I almost had to just call my own bluff and realize what is the worst that can happen and can I handle it? And it's developing this extreme sense of self trust to know that I have my own back, no matter what is going to happen, because I can't possibly think of all the different things that are going to happen.
And by the way,
things might happen that have nothing to do with MS. And I'm still going to have to deal with it. So turning that corner for me was, was stopping that fear of the future because really the fear of the future was I wasn't able to handle
[00:22:27] Morgan: Okay
[00:22:27] Andrea: to handle
[00:22:28] Morgan: let me go to analogy from your book. Cause I was, I was reading over this today and I loved your
backpack analogy that I think it was your dad. Oh my gosh.
For the brick that gets really hit home. And I was , how can I get this message out? I'm going to make all my students read it, but that's when they here nor there.
I'm just thinking from what you're saying, then maybe that at 10 years or around that marker, you develop a toolbox to put in the. Okay. Imagine when you're a kid and you have all your crayons and stuff in the toolbox that's what I imagine. You have the toolbox to know that you're going to be OK with whatever comes your way, the toolbox, maybe self trust.
Right. But it also, maybe your social groups are more stable, right? your relationship with your husband is more stable. Your income is more stable where you are not fighting against if I have a flare, if I can't do this, what does that look ? Right. So there's a sense that you've created at that point, a toolbox that you can tap into and open up and use those tools whenever you can.
whenever you need to
[00:23:24] Andrea: Yeah. I totally think that's possible because whether we know it or, or not, or whether we realize it or not, I think everybody, when they're diagnosed with a chronic illness, or even if they don't have the diagnosis, they just know that their body is going crazy enough. That something's just not right. I feel
we go into that survival mode and it looks different for different people.
for me, I was halfway through my master's program when I was diagnosed. I, I eventually went back and finished it, but at that point I left. Because I was , I’ve got to start work. I’ve got to get, I’ve got to get an income. I’ve got to get, insurance and yeah, it was , I need income. I need stability. I need this, I need that. And, and it wasn't a straight line to amazing tools and
[00:24:13] Morgan: hundred percent.
[00:24:14] Andrea: but it does show that
instant, survival that you need and it's instantly we, want to get those
[00:24:22] Morgan: crayons
we need to grab those crayons and your toolbox all the time of diagnosis is empty. you just have the box and it's just sitting, they're empty. And you're , dang, I got to fill this thing. , how do
I fill this thing? And who is giving me the
right information? How does this collide with who I am right now?
[00:24:35] Andrea: Yes. What do I even fill this with? How do I know? I need
[00:24:38] Morgan: Exactly.
[00:24:40] Andrea: number two
, what is this?
[00:24:42] Morgan: our, not really set up to help us decipher what tools we even need to develop.
[00:24:47] Andrea: And I think part of it is I don't necessarily think that I think that
our system is missing components because it's missing people. I don't feel we should go to doctors
and expect them to do all the things I was very lucky that my neurologist who diagnosed me and I was with him for a very long time was amazing. But I realize that he is the exception and I am totally fine. If you maybe don't have the best bedside manner, as long as you understand, and you know, what's going
on and you can tell me, you
[00:25:17] Morgan: hundred percent. that's what, so that's
exactly what I think too. Cause I think that we can't, we can't ask these physicians to be everything all in one. They're not therapists they're they are a physician. And I want 'em to look at the bodily aspects of me. However, I think our physicians largely, and there's always exceptions, but largely could do a better job of providing us with information about support that we need outside of the medical office.
And I find that that is where it's a lot of the time lacking for individuals getting a diagnosis of chronic illness, regardless of the age. It's just they're first off the diagnostic journey is super long. Getting someone to believe that you have pain. That's invisible is can't be done really.
So once you get a diagnosis, then it's okay, next step. And it's. That's where your journey ends without support. And for us being, educated and coming from, maybe for me middle class, right? I had resources at my disposal to help me find these and literally spend my education researching my own self.
Right. But there's a
lot of people that don't. And so what can we do be doing better to support these people outside of the
We know how difficult the medical system is to navigate for us. We are native English speakers, right? I spend my life educating myself on this stuff. And then I often think what if you weren't , what if English wasn't your first language, right?
Or what if you didn't have the money to go to the doctor? I'm just thinking theres just so many barriers to handling a chronic illness we haven't even experienced largely, or I haven't. so it's, that's you end goal is create a foundation. Those.
[00:26:51] Andrea: it is such a pro I think it is one of the largest failures of our healthcare system is that it is not set up to help people who don't have a leg up who need all the resources and don't have the support. that is
hands down. One of the biggest failures of our healthcare system. And I love that you're
[00:27:11] Morgan: Yeah.
[00:27:12] Andrea: Changing
[00:27:13] Morgan: we keep saying , do the research, right? I think this is even an issue. Right. Because it's ,
who can read the research though? Who even has access to the research, we have such an issue
of , even getting information to people our resources, some of aren't even incredible resources.
Right. And , those are the ones that are accessible to people that need it. I just are trying just people on our side to, to resolve
[00:27:39] Andrea: So something that you tapped on is looking at the research and doing your own
research while living lupus and while. Also, as
you know, we talked about creating your identity.
[00:27:55] Morgan: Yes. Yes. It's a really fun time.
Some days better than others. Yeah, it is a whole
lot. And I think that I again have an immense amount of privilege to just be in this environment where I can, , do this research and live in a place where I'm not worried about, , my wellbeing and those basic hierarchical needs.
it's been incredibly difficult and I think that having flares and trusting your body and. I vividly remember times where I walked into the classroom. I was teaching a health communication classroom and I had the choice because I was experiencing pretty severe brain fog and, you know, leading a class with brain fog is not ideal
But so I was , I have the choice then to actively disclose there, some have this be a center of conversation in my classroom and a learning experience, or I have the choice to, you know, be fraudulent and try my best to give them an activity or something that takes pressure off of me.
And those were some really pivotal moments in, in my life thus far of saying I'm going to lean in instead of lean away from this. Cause I think this could be a very impactful experience for my students to see what it is to live with the chronic illness day to day life.
[00:29:03] Andrea: Oh, I bet it was were,
[00:29:05] Morgan: Oh, so compassionate. So caring, just I cannot believe you go through this. How often does this happen? Wanting to know more information what does the rest of your day look ? They were very concerned was , okay thank you for being here, but what, what are you doing next?
And, you know, you know, going home, going to bed,
I'm not going to stay, I'm not going to have office hours after, it's kind of doing that bare minimum. And then it actually made the, their final project in that class was looking at individual's chronic illness experiences. But looking at them from a, a biomedical model way of these are the symptoms of it.
That's how you get diagnosed, but also looking at real experiences of it. So I made them go to Reddit and go find blogs of chronic illness experiences. And they had to produce their final presentation on both the social and relational aspects of a chronic illness as well. Um, These more biological or medical aspects.
And a lot of these were pre-med students and it was very impactful to see how they grew through that experience. And, and something fun that I did is, you know, we don't get to choose our chronic illness. you weren't , Hey, I'm going to, I'm going to pick out MS. That's the one.
[00:30:06] Andrea: I want this
[00:30:07] Morgan: So I
assigned them randomized chronic illnesses.
I said, this is your chronic. And the kid came up to me , do I really have to have IBS? I was , yep. Good luck. That's what you talk about.
He welcome to life mm-hmm.
[00:30:18] Andrea: I mean, talk about immersing them in this, especially IBS,
[00:30:23] Morgan: highly stigmatized. Yeah.
[00:30:26] Andrea: That's amazing.
[00:30:27] Morgan: So I guess to answer your full questions, this has been a difficult journey, but I think that time I learned how to tap into that journey as one of my superpowers is something that could make my classroom distinctly different than the average professor's classroom that you see in a college
[00:30:41] Andrea: Yeah. You are
giving that superpower to your students because you're allowing them to see the psychosocial aspect of living with a chronic illness. And it, I think that is so important because I think if
anything, it brings that compassion to the future people that they're going to be working with, be it patients because they're doctors or
just people in their lives that they
come in contact with
[00:31:10] Morgan: and I think the invisible nature of it for me at least has been a, a challenge that I lean into quite a lot, because I think that , when you have an invisible chronic illness, there's something about me that visibly would give you chronic illness. I think most parts about me actually visibly give you no chronic illness.
Cause I dress a certain way and act a certain way.
Right. But I think then I have, I, I have a choice to disclose and I think that that is a sometimes daunting choice to disclose, but also can be very impactful and change the way that my students or just people in general view individual chronically ill.
Oh, you don't look ill. Oh, you're not old enough to have this. I mean, these are all the comments you get. You know, explaining fatigue to someone that is doesn't have a chronic illness's. What does that look ? Oh, just drink a coffee. Well, not exactly what it's, so
Yeah interesting, it's challenging, but it's also
insightful and very impactful for me.
And I hope my students.
[00:32:03] Andrea: I can't imagine that it's not for your students. And just being able to show that a lot of people who are chronic chronically, can I say the word?
[00:32:16] Morgan: you can. You've got this.
[00:32:19] Andrea: I cannot say it, the word. So a lot of people who have chronic illness, it's a good lesson have Hey,
just because someone
looks. Normal doesn't mean that they
can see you with both of their eyes. Right. Doesn't mean that half their body isn't or tingling
[00:32:39] Morgan: Yeah. And you
remind there's this case study that we commonly give to students. And it reminds me of that. It's the person that parks in the handicap parking spot, but they get out of it and someone want to attacks them. you're not handicap. How dare you?
[00:32:52] Andrea: I hate
that every time I see that there's so many stories
[00:32:55] Morgan: you don't know, don't know why I'm taking the elevator to the third floor.
I know. I look very able bodied, Hey, it really takes out of me. And I'm really fatigued
when I get up the stairs. So don't judge me.
[00:33:05] Andrea: Parking farther away and walking that parking lot, especially if it's in the summertime or you don't know what the rest of their day looks
[00:33:13] Morgan: Literally
[00:33:14] Andrea: off of their day. could be, you know, that could be the end of their day or
then they can get a
[00:33:22] Morgan: or even if you think about it, beyond physical activity, social, I different people, you know, there's you know, introverts, extroverts, whatever. Right. But for someone that's chronically fatigued for me, social interaction takes it out of me. I need a day to rest from a social interaction.
And so I think that even understanding that and the nuances of what it means when someone says they can't go out. Does it mean that they're physically ill? Maybe not. it just means they just need a mental break. Cause that was so fatiguing the last time they hung out or whatever it's
[00:33:50] Andrea: yeah. Or they have to plan, they have something the next day they got to plan for, you know, it's kind of if you're running a marathon the next day, you're not going to go out drinking the night before. I'm, you know, I. very extroverted. And maybe we should stop , and just do a quick definition because I know there's a lot of talk about it.
Introverted versus extroverted doesn't mean that you people or don't people or anything.
It just means that you either get energy from interacting or you don't, and it sucks the energy out of you and to recharge
you either need to be around people or be by yourself. That's all it means that doesn't mean you people or whatever.
And so I have to watch out because I can get very extroverted to where, when I have an
interaction, it just boom boom boom it just charges me up. But then after, and when I'm alone, it's total crash
because that energy charge is just gone
There's always this element of you have to be, I don't want to say you have to be, but you need to be okay with it. Right. You can't beat yourself up about it. You can't try to see yourself through what you
[00:34:54] Morgan: totally.
[00:34:55] Andrea: are thinking about you to that.
[00:34:57] Morgan: I think that after getting diagnosed and coming to those realizations about myself and the guilt that used to go alongside saying no to people and all of those things, I came to the point where I guess got really selective about my friends.
I was , I'm going to choose a friend from the GetGo. They, if I don't think they can understand if I cancel last minute, cause I am tired or something just don't have it in me for that day. That's not a friend I want. I just did a, a spring
cleaning of friends. Just out, out.
[00:35:22] Andrea: Me too.
[00:35:24] Morgan: See you later. AKA never. Yeah.
[00:35:26] Andrea: Yeah. I demoted a lot of people. especially, you know what, especially in that 10 year
period after I was diagnosed.
Interesting. Because you learn when you're
diagnosed, you learn a lot about the people around you and you know, your changing Because your own identity is changing. And if those people aren't on board, they're very clearly not on board and I'm trying to think if I, I didn't necessarily cut people out, but I remember
Looking at kind of the hierarchy of who do I want in my inner circle?
and then other people I'm , you're just demoted a little bit.
[00:36:03] Morgan: mm-hmm right,
[00:36:04] Andrea: with you. But I'm not going to go to any big measure to
[00:36:08] Morgan: right.
[00:36:09] Andrea: or see you or, you know,
[00:36:11] Morgan: Right.
[00:36:11] Andrea: waste my
[00:36:12] Morgan: Which is so precious. Yeah. I think it's and I think that, , I think that a lot of times when I read research or read blogs and stuff, I think that people talk about this is occurring, right after a diagnosis, but it it's processual It happens over time. Right? I don't know if you this way. I have actually found friends that are chronically ill too. That can be a, a different amount of taxing friend. And I, and, and it, I think that's been a really interesting occurrence, cause it was a point of connection for a lot of times, but then it was , I'm having to provide support for things that I also feel.
And that's incredibly difficult at times.
[00:36:46] Andrea: Yeah. I think you're right. One of my very, very best friends has a chronic illness.
I think what has kept us really close, especially dealing with that on that level is that there's a tremendous amount of respect and
giving each other space and allowing if another person, you know, if the other one wants space,
neither one of us has ever taken that personally. it's, it's
[00:37:12] Morgan: Mm-hmm
[00:37:12] Andrea: unwritten understanding.
[00:37:15] Morgan: So I think that might be the difference. I'm just thinking of these past people in my life. And I think that it was so taxing because that was their primary identity and it wasn't mine. And so I think that maybe it's the equivalent of where it's the salient of it for your identity.
So if you find two friends or even a romantic relationship, right. the chronic illness identity is of around the same salience, creates a really compatible partnership.
But when it's of different, maybe doesn't, I.
[00:37:39] Andrea: I mean, and that, and you're right. It's that across everything. Right. You want to be, especially the older you get, you get more understanding of what your own energy and understanding and identity is, and it becomes more and more valuable to be around people that match, not match the same identity, but
same. you said, salience of
[00:38:05] Morgan: yeah. That's fascinating. I want to research that too. Now senior's giving me all these research ideas.
[00:38:11] Andrea: sweet. That's what I do. It's what I do. I no, I mean, I love it. I love,
I, I love asking questions. That's my,
[00:38:20] Morgan: I, I
asking questions too, but then I have to do a three year study on it, you know, so I can't ask. I have a list of
questions. I'm , I need to study this one day and this, this will add on to it. This is great.
[00:38:30] Andrea: Well, and I think it's going to be so helpful to people because when you're dealing with a chronic illness and there's so many factors and so many moving pieces, it's the understanding that your identity is all over the place that
doesn't even necessarily come
[00:38:42] Morgan: no, you're so right.
[00:38:43] Andrea: So for people to even
something that and be ,
that's, what's going on.
[00:38:50] Morgan: mm-hmm .And I think that most of the time, when we talk about identity, it's anecdotally, in, you know, TV shows or whatever, we talk about identity as this solo construct. we have one identity but then , you'll see, there's been movements we are many, we have multiple things, right.
It's just, it's a good movement. we need to be moving towards this place. So it's we have multiple, we have our chronic illness identity and how that infiltrates our other parts. Our religious identity, our romantic relationship identity, you know, all of these things intersect, but I think a lot of the times helps us cause we, as human beings are naive scientists.
We're always trying to put people in groups. so it helps when we find one
identity that we think is most salient to put someone in that group, that's actually detrimental to that. Person's wellbeing and understanding chronic on this in general.
[00:39:35] Andrea: that makes me think of something. One thing that I've seen is being too rigid, you said, in that identity can impact. You're learning and how, you know, something that you re something else, you research, how well you adhere to treatments and different things, because all of a sudden your identity is well, I'm
not the kind of person that does that.
I'm not, that's not me. And you feel you're somehow. And I remember working through this with myself very, very clearly, thinking that if I changed my mind or switch gears or try something new that I wouldn't have,
felt I was being a hypocrite or I was kind of going against myself or I was not, I wasn't being who I am.
I wasn't. And it's, it's really interesting even if you're too
it's you're missing out on all these other
[00:40:29] Morgan: It is constantly in a process of going through the tensions of these different identities and what it means to make sense of your whole self, your whole self-concept with this new identity as being part of it. And it's incredibly difficult and people do it at different paces.
And a lot of times we talk about identity change. Is this really negative thing? it can negatively adherence, or it can be really bad, but , that's actually not what I found my what I found in my own experience is , my identity change has actually been fairly positive, I would say.
And while there was some negative times, when I broke up with my romantic partner, right. That was a negative change, but finding a new partner, positive identity change. Right. It's , , I don't know, just in research in general and kind of how we talk about chronic illnesses. We just talk about it negatively.
And it's just , that's simply not what I found in my research and what I found in my experience. And I kind of think, but you speak to as well, it wasn't all bad and I'd,
actuallys. say be a strong statement. I think I'll say it. Um, Actually think that it was positive. I think that it really changed life trajectory for the better
[00:41:28] Andrea: Yeah, it's one of those things that I say quietly to myself and to people who understand me, because I know it's the most annoying thing for some people to say, but on some level I have gratitude that I was diagnosed with this, and I am navigating life with this chronic illness. Now that's not to say that this has all been amazing because holy crap.
No, I mean, no, but I feel I
absolutely would not be where I am right now
in a good way. if I wasn't diagnosed and I wouldn't be, I
probably wouldn't be taking care of myself the way I am now, if I wasn't diagnosed, I probably wouldn't have become, I've always been kind of an introspective person, but I don't think I would've made it my career, if it didn't
you know, if
my health didn't depend on it.
And I, I realize again,
[00:42:24] Morgan: I know. I agree. Totally with you.
we should put an asterisk on it right now. mean that some parts have made
us better, but you know what? We also can't
look back at what our life would've been We not have had it. So who's this, this is the, the lemons we were
given and we have made some lemonade, but that's not to
say that they weren't bitter and sour and still are at times.
And there's actually a lot of
studies that I've found, when we have this kind of post traumatic growth, which is what I call this in my research. Most people don't think of chronic illness diagnosis as a traumatic incident.
I kind of frame it in my research as a traumatic incident.
[00:42:58] Andrea: I
think it is.
[00:43:00] Morgan: Yeah. So similar you know, people typically talk about trauma incidents being hurricanes and stuff, but this is even worse, right? Because what if you were in a hurricane your whole life? So post traumatic growth is really important. Not only for with your chronic illness, but it actually. The, reach of post traumatic growth goes beyond your chronic illness, your ability to grow from other traumatic incidents. After having grown from chronic illness diagnosis is actually much more ly.
So kind of back at the tools and toolbox, we
are given tools as we handle and cope with chronic illness that are applicable outside of just health and wellbeing
[00:43:34] Andrea: I mean, we're some resilient people just really quickly, for some people who have
not heard about post traumatic
[00:43:41] Morgan: So post
traumatic growth is the idea that once we have a traumatic incident, it's commonly again, been used hurricane or national disaster research that, um, you can grow because of it. So you can become better after the incident than you even were before the incident, not to say that the incident wasn't traumatic and wasn't really bad, and that still holds some negative feelings you can grow and be better after.
And so recently it started to be used in some studies of chronic illness to show that after certain chronic illness, you could have these positive positive, beneficial, outlooks that really help in other facets of your life, beyond the chronic illness. So that's why they call it post traumatic. So it's after the trauma, which, you know, in future research,
I would actually to rename it because for chronic illness, is it really post traumatic
Is it post maybe we just drop posts.
[00:44:27] Andrea: I love that. What would you,
[00:44:29] Morgan: may be ongoing, traumatic growth or longitudinal traumatic growth.
Something to emphasize that with chronic illness is the,
trauma's never really gone.
[00:44:39] Andrea: I love your analysis with
the hurricane or I think of it as a tornado. If there's a
tornado in the area, you never know where it's going to touch down and it's that forever.
[00:44:48] Morgan: con forever. You gets constantly in waiting for the tornado to sound,
[00:44:50] Andrea: Yeah.
[00:44:51] Morgan: house gets demolished one time. But in an actual tornado, you can rebuild it and you can go on your way. Right. But our house gets demolished and then we're waiting for the next tornado to
drop traumatic incident.
Right. And then we have to rebuild the house.
[00:45:02] Andrea: I. Love that concept. I first learned about it when I, I did some consulting with the national MS. Society and taught some classes. And we, they had a course that in a book by Sean Achor, which is The Happiness Advantage, I'm pretty sure that's what it is.
And so he, his research was all about positive thinking and how it affects the brain, but he had a section on post-traumatic growth and I thought it was, and this was a while ago. And so I thought it was smart of them to bring something in that and help the people that came to the MS society let them know Hey, this is an option because I had never heard of it.
[00:45:47] Morgan: And so it's really interesting, cause we often talk about it in resilience and resilience is actually the idea that you just bounce back to the same state. So when we're resilient, we're just ,
okay, well, that really bad thing happened to me.
And then we're just going to we're, we're we're back. We fixed it. But the idea of post traumatic growth is not only did we experience, we not only bounce back to where, or we bounce back above where we were.
Right. Which I
think is a really impactful thing. Because resilience is great. Yeah. does it mean to even be better
than that, than who we were before the incident?
[00:46:18] Andrea: I think that's, that's important Because it helps people see oh wait a second. I'm not just resilient. I'm
actually, I am coming back more knowledge and understanding and
more tools and more everything.
And I think just being able to identify that within yourself Hey, I didn't know about this
thing, but I realized that I've gone through it.
[00:46:39] Morgan: yeah, I think so
And I think that most people
probably don't reflect in that way, but I urge any listeners that are listening to this to take some time to reflect on Hey, obviously there's some negative things that happen, but what, how are you better because of this? Cause I think most all of us, there's a few aspects, at least no matter where you are in your journey, that you're better because of it.
You're better at saying no, you're better at respecting your own body. You're better
Right. There's so many things you're better at
Knowing what you want in life. Right. Being , this is what I'm going to go. I'm going to go get her
now. Right. So there's usually always something, regardless of where you are in your
chronic journey that you have already become better at you're better at navigating the healthcare system.
I mean, that's a win, so Yeah.
[00:47:20] Andrea: Right. Yeah.
Oh my gosh. Even if it's the little things, you're better at understanding what your body is telling you as far as what you can do and what you can't do. I remember I was helping somebody who was training for bike, MS.
And which is a bike ride and she realized that she would get a little fatigued and her body was starting to get a little stiff, but that didn't mean stop what her body was actually letting her know was that she was about to go into another gear. And so that was not the end. That was , okay, I'm at the midway point because I know if I keep moving and I keep
[00:47:55] Morgan: Right.
[00:47:56] Andrea: I'm not saying , keep push it. You know, I'm not saying that, but if I keep going, that is actually going to be the turn of a page and I know where I'm at and
[00:48:07] Morgan: Totally.
Yeah. Knowing your body that guess
Reminds me of when I, so I haven't been what we call coursework in academia, which is this idea, you are still more of a student, I've been kind of on my own for a while, which happens later on in your career. But when I was in coursework, there's so much reading.
You have to do so much reading. It's very intensive. Right. And I was just, my fatigue is too high at night. I had taught all day, I had gone to classes, whatever, and most students at this time would stay up for the rest of the night and read articles.
And I figured out quite quickly that instead of that I was going to have to go to bed and wake up at 4:00 AM. And, and, and so knowing my body enough to know that no longer would I be pushing myself through the all-nighter that my peers were doing, I had to kind of shift gears. Right. it was , I got to shift.
And what this means is a 4:00 AM wake up all. And I know that doesn't align with my peers, but that's what I've got to do for my body to make this work.
[00:48:58] Andrea: And you know,
cares? What aligns with the peers who cares, but it, you know, it takes a while to say that, to say , who cares, what other people are doing
[00:49:05] Morgan: I I mean, I remember that really that's kind of the first time I realized that I had lupus was when I was. On undergrad in the dorMS. And I realized that people didn't need nap as much as I did . And so I was , I should.
So I think that there is this beautiful thing of comparison leads times to diagnosis, but then becomes one of your A's heels after a diagnosis.
And so I think it's just a juxtaposition of
[00:49:32] Andrea: so if there's
one thing and I know this is such a huge question, but if there is somebody listening and they're thinking, holy crap, I never even thought about this identity thing. I never even realized that that is one of the major things that I am dealing with it's okay.
natural, but this is something that's huge.
you tell them as far as helping them start that journey? Which may or may not be 10
[00:50:01] Morgan: we're going to try to really get that down to less than 10 years. I think that I would say. First off, you can do this. This is going to be a journey it's not going to happen overnight. But I would also say that there's a therapeutic technique of identity mapping that I would highly encourage you to do, which is this idea that you lay out all of your identity that you have.
So we talk about names. We can talk about racial identity, ethnic racial identity, so more of these macro gender ID, macro
micro identities, right. To lay them all out. And, you know, I have really specific guidelines how to do it, but you can do it very generally and connecting those different identities with different lines.
So you could do a squiggly line. If these two identities don't really align well with each other, for instance let's say that I really am young. And so I'm a young, vibrant person, so that's part of my identity structure, but chronic illness makes be fatigued. So those two identities really wouldn't align, right.
Squiggly align. Right.
But other identities, let's just say me and my current relationship and my chronic illness identity, those would be a straight line. Cause that really aligns. Those are really easy to be a part of both those identities and to enact those. So I think what I would suggest is putting this out on paper and really visualizing a, the identities you have beyond your chronic identity.
Right. But B to see how they all fit together to make up who you are. And again, it's so much more than just this one And then those squiggly lines that you don't that are squiggly. Making a plan for how we're going to make them not squiggly, is it that we need to get rid of certain people? that we need to disclose?
Maybe you haven't disclosed
your illness. Maybe they would understand, right. that we need to limit our time, create boundaries, whatever it may be to to try to make our lines
and less squiggly or difficult to part of multiple identities.
[00:51:45] Andrea: I
cannot tell you how much I love that. of all, I
[00:51:49] Morgan: Yeah. same
[00:51:50] Andrea: That is so amazing to realize just because two identities aren't matching up doesn't mean that
either one of them are invalid or have to
change, we could keep them and just work
on how they together
[00:52:10] Morgan: and I would also, one more thing I would add is just that tap into the social networks that you feel comfortable with. There's been a lot of research and a lot of theories and social psychology about how our social networks can actually have a curative effect on our chronic illness and our wellbeing.
So that is when you don't have a stigmatized at, but if you can tap into these social networks, these people can provide you with a really, really, really amazing support network that you need to lean on and need to start to feel comfortable to lean on during these transitional times. Cause your identities are going to flow and flux and it's going to be a process.
But having those peoples that are stable for you and knowing that they're there for you, we actually, one of the most interesting things is that perceived social support is actually more influential on wellbeing than actual social support. So the idea that you. Think that you have people that are there
for you is so impactful.
you really don't even need to
tap into it. So, which is visualize, visualizing and thinking about, and reflecting on these things, that alone is just really helpful for your wellbeing.
[00:53:10] Andrea: you said, having people who understand, who you are and what your identity especially is when it comes to this chronic illness, which is a very big pivotal role, because feel you need I always feel it's such a cliche, but you do, you need that safe space to be able to figure out because the worst thing in the world is when you're figuring out your identity and
other people get uncomfortable
because they thought they
knew what your identity was, but hold on, why are you changing it?
[00:53:36] Morgan: that could be some of your closest people. it can be your family. my family really struggled with this. Right. my mom, I love her to death. We talk 18 times a day, but she was , why can't you walk around the mall for 15 hours? And I was , well, cause I'm tired of my knees hurt, But she was , come on, let's just keep doing it.
Kept pushing me. Relationships can be really
a struggle to, but that doesn't mean that they're bad and you can still work to explain them and to clarify things and that relationship can improve with the, with the alignment of your chronic illness.
[00:54:02] Andrea: I'm
going to have to have you come back and talk more about , especially once you start
looking into all
[00:54:06] Morgan: many to come. I love it.
[00:54:08] Andrea: Thank you. So, so much, I know this conversation has helped so many people, probably I uncover maybe something that they knew was not working or was different or was really uncomfortable and just putting a name to it and understanding
what's going on, I
think is so, so helpful.
So thank you so much for coming and sharing
[00:54:29] Morgan: I have really enjoyed this and I really hope that, you know, people can contact me, whatever. I'm just here to help and make my knowledge accessible to those who need it the most.
[00:54:37] Andrea: so much.
Thank you for tuning into this episode of live your life. Not your diagnosis. If you the show, don't be shy. Please give us a five-star rating and review. Follow us on apple podcast, Amazon music or wherever you're listening right now. To see complete show notes and resources mentioned in this episode
visit AndreaHansonCoaching.com. Thank you for joining me And until next time take care
About Live Your Life, Not Your Diagnosis
Hear inspiring discussions with people living with chronic illness. These people went after their passions and big goals -even when everyone told them they couldn’t. Listen to stories of resilience and gratitude in the face of uncertainty.
I’m your host, Andrea W. Hanson, Author, Motivational Speaker, and Autoimmune Rebel living with multiple sclerosis. You’ll not only fall in love with these guests, but you’ll soak up positive mindset tips and ideas to find your own unique path to success.
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