The Invisible Toll of Chronic Illness: Navigating Medical Dismissal, Grief & Identity with Destiny Davis (316)

0:00So I would imagine there's a way you can take that same concept of just always staying one step behind and going with that, especially in the illness space, because they are researching or maybe they're not. Maybe they're not a researcher. Maybe they want you to do that for them. Maybe you are the researcher and maybe you feel like maybe I am enabling them by doing all this research and they're not even learning about their own condition. You know, I don't you could be that way. And also, like, what are they good at? What are they doing for themselves? And what are they working really hard at?

0:31And then can you take on that research? Do they listen to you? Do you come to them with research and they're like, yes, and thank you for bringing that to me. Now I'm going to go do that thing. It's such a give and take. It shouldn't just be all give, give, give, give, give. It really needs to be give and take. And I think that's how you learn to do this dance.

0:53Ann Kelley: Welcome to Therapist Uncensored. Building on decades of professional experience, this podcast tackles neurobiology, modern attachment, and more in an honest way that's helpful in healing humans. Your session begins now with Dr. Ann Kelly and Sue Marriott.

1:15Ann Kelley: Chronic illness is one of the most common experiences in the country and yet one of the least talked about. Roughly three out of four Americans will live with at least one chronic condition for a period of time. And for many of them, the struggle isn't only the illness itself. It's the months or years of symptoms without an answer. It's doctors who say it's all in your head. And it's when a sense of their own body stops being trustworthy. It also touches the people around them, partners, parents, friends who want to be helpful, but they can end up exhausted, lost, or honestly accidentally making things harder.

1:55Ann Kelley: Even well-meaning therapists can add to the strain without awareness. So today, we're going to take a look at what it's like to live with an illness that's easy to overlook, how it gets missed, and what it does to a person's sense of self and their relationships, and what supportive people can actually do. We're also going to spend time on what therapists and other clinicians need to know about working with this population. So our guest today is Destiny Davis. You're really going to love her. She's a licensed professional counselor and a certified rehabilitation counselor and private practice in Atlanta, Georgia.

2:29Ann Kelley: So she specializes in psychotherapy for adults with chronic illness. She also leads clinician consultation groups for physical therapists, occupational therapists who work with this population. and she hosts a podcast, The Chronic Illness Therapist. Great podcast, highly recommended if you're interested in this topic. All right, let's jump in. Welcome, Destiny. Thanks for being here with us. Thanks for having me. So let's start with the basics. What do you mean when you're speaking of chronic illness? Chronic illness technically is actually anything that has persisted for longer than three months.

3:09But those of us in the chronic illness community don't use that. I think most of us have been, usually you're suffering for much, much longer than that. So it really is anything that is a chronic health kind of issue, anything from persistent pain and symptoms to your more well-known conditions like diabetes or even cancer or, you know, fibromyalgia falls in that realm. There's so many, so many.

3:36Ann Kelley: Yeah, and some of the information that you sent over before the podcast, and I discussed that in the intro, like three out of four Americans likely struggle with some kind of chronic illness, especially, I guess, depending on how you define it and it's so broad. But that's huge, and we don't talk about it very much, and yet it is such an impact on us psychologically because we have such a health-oriented, bootstrap kind of mentality that makes this really difficult to talk about? Yeah, the CDC reports that 76.4 % of the country now has at least one, and then 50-something percent has at least two.

4:18Ann Kelley: Wow. It used to be 60%. That was the number when I was going through grad school. That was what I had in all my papers. CDC reports 60%. And so, yeah, in just 10 years, it's jumped up to 74%. Wow, wow, wow. So when that happens, so often it goes overlooked or undiagnosed, or we just can't even figure it out. So what happens when somebody goes for months or sometimes even years without a diagnosis? Yes, this is the crux of all of my work. When I was in grad school, there was a term that I came across in the literature called medically unexplained symptoms. And at first, when I read this word and I found the literature, I was like, wait, someone is researching us.

5:02They get it. And then I kept reading and medically unexplained symptoms. I soon realized meant you're making it up. You're malingering. You're looking for attention. And this is now in your chart as you are a problem patient. And so when you go years and years and years without a medical diagnosis, you internalize that. It's kind of like you can liken it to children with undiagnosed or untreated ADHD, they develop a self-concept around, I'm the bad kid, or I'm not the smart one, or I, you know, there's something wrong with me, rather than realizing that their environment has just not caught up to what their needs are.

5:41So it's the same thing in the chronic illness space. You really internalize all of it and you stop seeking medical care, because why would you continue to go when, you know, you're being told there's nothing wrong with you. And even worse, you should be happy that your labs look this way because it means there's nothing wrong with you. And then that's that. And it's like, yeah, okay. Like I'm glad I don't have cancer. And also cancer gets missed. Like the worst of the worst diagnoses get missed. So it's an odd thing, I think, for that to still be happening as much as it does, because I think we all know by now, I mean, in the literature too, it's, it changes depending on what diagnosis you're looking at, but in general chronic illness, kind of overarching research, seven to 10 years is how long it takes to get an accurate diagnosis.

6:29And the whole time you have the condition, the tests just haven't been able to find it. Why do you think it gets so overlooked? I think, you know, in medicine, they really like understandably, you know, to have accurate precision with medicine and treatments, you want to make sure you're correct. And the criteria that we use in research to research certain diseases is very, very specific because in order to do a gold standard, double blind, randomized controlled study, everybody involved has to have the exact same definition for what you're working with across the board. And that makes sense. But the problem is actual conditions are very dynamic.

7:09They fluctuate day to day. I mean, even, you know, take diabetes. That's something that you can get. We know how to diagnose that. We know how to treat it. And yet I had a diabetes specialist on my own podcast and she was explaining that the type of diabetes often goes missed. So there are different, I didn't even know this. Well, I knew there was type one, which we think of juvenile and then type two, which we think about like adult onset purely related to diet. That is one, not the case. And two, there are more types than just that. So even in conditions that we know really well, it's getting missed because we have these very stringent criteria used for medical research, which differs in clinical practice.

7:53One of the common things I work with is mast cell activation syndrome. And that's a really controversial kind of like way to diagnose because the research criteria says you have to have an elevated triptase, but you can have not have an elevated triptase in your blood and have all of the symptoms, anaphylaxis, head to toe rashes, itchiness that just doesn't go away. And then the treatment for MCAS, if you take that treatment without the elevated triptase and it works, that's enough for many clinicians these days to diagnose you with what they call consensus two criteria. But there's still a lot of doctors who are like, nope, if it doesn't match consensus one, then we don't diagnose it.

8:37If you don't get a diagnosis, then you don't get treatment. If you don't get treatment, then you go years wreaking havoc on your body and your mind. So it's this mix of logistics. And also, we could talk about bias all day in literature and And in medicine, there is a lot of bias there as well. And women tend to be more dismissed. And we've got research around it. We've got books that have been written for centuries around it. And we have clients who come into our offices every day saying, when I brought my husband along, my doctor listened to me.

9:12Ann Kelley: That's so accurate. I've heard that so many times in my office as well, that the legitimacy went up also depending on the gender of the doctor themselves. themselves. So yeah, I would love to talk about biases. And one of the things I hear you talking about is, you know, if they don't meet criteria, it feels that it gets dismissed out of almost like a protective sense of, you know, I don't want to overdiagnose. And I think about just the emotional impact of knowing you have these deep, you rashes all over your body and pains and somebody saying, nope, we don't have anything to explain it. That just must be devastating.

9:51It is. And no one really says to you in these medical appointments too, you know, okay, this showed negative, come back, we're going to do X, Y, and Z. It's usually just like, okay, this is negative. And they might say, go home and, you know, take, for example, with MCAS, take, I know I'll say my own allergist was like, go home and take eight Allegra a day. And if that works, then it means that we can work with that or we can maybe if it doesn't work, this was years ago. I'm trying to remember exactly how he phrased it. But it was like, if it doesn't work, then we can think about trying some biologics even without the diagnosis.

10:29But I remember that was more helpful than what most people get. I will say that was more than most. And I still left feeling like, OK, the Ata Legra is working. I'm no longer itching from head to toe. and also what do I do next? Because I don't think this is safe taking eight olegra a day. And so that is not medical advice for anyone listening who is itching. Please see an allergist who specializes in MCAS.

10:54Ann Kelley: Well, tell us more about the mast cell activation syndrome. This disease, like I said, is a little bit, it's becoming less controversial. I think people are understanding it more. There's this huge MCAS conference that happens every couple of years. people are really, really interested in the science around it. So that's good for us. But it's essentially everybody has mast cells in their body and your mast cells start to basically misbehave. When you are allergic to something, you will get a mast cell response. In mast cell activation syndrome, you can get that same allergic response without actually being allergic to something.

11:31And so it's very confusing. You might react to your face wash one day and then not another day. And so in therapy, like in the work that we do here with MCAS, it's very tricky. And I work very closely with my clients, medical doctors, but depending on the person, we might actually continue to expose them to things that gave them a reaction in the past, because it may not actually be that specific chemical like in the face wash or it might not be a specific food. It might be something else because there are lots and lots of things that activate our mast cells, things in the environment, stress, food, all types of things, heat.

12:14So if you have a disorder around it, it can be very easy to start, your world can start to shrink. Like I've got a lot of folks who are down to four foods. Sometimes it gets that way because of anaphylaxis. They react to foods that they never used to react to. Yeah. It will still show up as like, you're not allergic to it. If you were to go take a skin prick test or something like that. And so again, in those cases, we're not just exposing them. Like it is very close work with their doctors, but yeah, it's a really tricky one because it's so inconsistent. People don't like inconsistent things.

12:48If it's inconsistent, then it doesn't make sense. Our brains doesn't like it. And so we try really hard to do what we can to make sense of it, even if that isn't accurate.

12:59Ann Kelley: Is somebody working with these symptoms that move? They can't be consistently nailed. You eat this, this is the response you have. Imagine it takes a clinician, and I know later we'll talk about being a therapist for someone that's experiencing this. But if this is you or somebody you love, who's coming to you, and this is just one example of so many different chronic illnesses that don't make sense. People are like, well, you look like you're having an allergic reaction, but we've tested you. You're not. You're good. I imagine after a period of time, just again, how it hits us psychologically and your life keeps getting more limited.

13:40Ann Kelley: And I imagine family members and friends who want to be supportive, but feel confused about this, don't quite know what to do. Yep, exactly. And then our defense mechanisms might get in the way and we might start to act in ways that aren't really consistent with our values. You might start to question your loved one, or you might start to distance yourself from them because you are confused and unsure, and maybe you don't believe them anymore. Or maybe you think, you know, this is a common one, like, well, you were fine yesterday, but now that today is here and you're supposed to go to work or do this thing that I know you don't want to do, now all of a sudden you can't do it.

14:27Ann Kelley: How convenient, right? Like you were able to go do A yesterday, but now B, when you don't want to do something, you can't go. So it must be that you're using this to back out of something. and how confusing to the individuals having real, accurate symptoms that can't be named. Exactly. Especially the can't be named part. It just makes it all so confusing. So the fact that it can't be named makes it so much harder to believe, even for the person experiencing it. Because when you feel better, some of the thoughts you start to have are like, maybe I was overreacting. Maybe I could have gone out of bed, but I really didn't want to do that thing.

15:09And that's the part that is hard too, when it's like, you can admit like, no, I don't want to do the dishes or like, no, I didn't, who wants to do those things. Right. But I'll say when you're chronically ill and you can't do those things, I know that getting back to being able to clean my kitchen was a big part of my, like, I just wanted to be able to clean my kitchen again. And I'm talking about a little bit about a recovery story for myself. And I want to acknowledge that not everybody has a recovery story.

15:33Ann Kelley: Can you share a little bit about your journey and it's inspired the whole direction that you've taken in your clinical practice. So maybe we could use that as a baseline. Yeah. And I think to that point, I'm not like 100 % recovered. I take medication for this kind of MCAS situation. I did not have the elevated triptase, so I don't technically have this on paper diagnosis, but I am treated for it still. And there was at one point, like a term we haven't defined yet as post-exertional malaise. And so post-exertional malaise is this concept of, you know, if you go to the gym and work out, you might kind of feel fatigued after.

16:11Well, somebody with post-exertional malaise, which is a hallmark of ME-CFS, myalgic encephalomyelitis, also long COVID and other conditions that again, the science just hasn't caught up to yet, like Lyme disease and things like that. Post-exertional malaise, that fatigue will happen 12 to 48 hours after the exerting event. And exertion could be just doing the dishes. It doesn't have to be a workout or anything like that. And it could be cognitive too. It could be difficult work on the computer, things like that. So post-exertional malaise is a hallmark of a lot of these chronic conditions and people don't understand it because it's so removed from the exerting event.

16:54You know, my journey has involved so much. I have spent a ton of money out of pocket for treatments and things that are not even evidence-based really. There are some things that I've been on for like a few years now, like medications and treatments and stuff that are becoming evidence-based. Since COVID, we have had an explosion in research around ME-CFS. Again, the hallmark of ME-CFS is post-exertional malaise. And that also comes along with long COVID. So long COVID has really exacerbated some of the research that was already there that to be honest, no one really cared about before. Now there's so many more people affected by long COVID.

17:33They care a little bit more. benefits us in that way.

17:36Ann Kelley: So now there's actually like words and there's names, like these things that you've been experiencing and try to help other people experience. Now that there's research backing and you have a name and you can go, yes, that's what I experienced. And what a relief that must be to those that get believed and it gets finally researched. And there it is like, yes, that's exactly what happens to me. Exactly. Yeah. And so people really will cling to some of these words and identities around illness. And then they get labeled as malingering for that as well, because it's like who would want to identify with their sickness.

18:13But at the end of the day, when you've been dismissed for so long, and then there's a word that liberates you, you're gonna cling to that word. And so part of the work I do with clients is figuring out how to, I always say to with the identity work, there's a certain point where you are searching for answers. You're searching for doctors. You're searching for treatments. You are trying to do research because the doctor in front of you might not have done all of the research around it. They don't have the time, quite frankly. They're like in their day to day. And so you kind of have to identify with your illness for a little while.

18:49It's survival. It helps you find answers. And then there comes a certain point where, you know, you might start feeling a little bit better and with the right support, you'll slowly start to kind of de-identify a little bit. It doesn't consume every waking moment of your life. You know what treatments work for you. You know what your rest days look like and how many you need. You know what a flare up looks like and how to take care of yourself when that's coming on. And so that's also a lot of what the work looks like too, is how do I take care of myself? when I like now need to be out of work for two days in a row.

19:23And that's not really possible. So how do I make these really hard decisions and take care of myself when it's difficult to do? Yes.

19:31Ann Kelley: I can imagine you were mentioning like what's malingering. You see somebody that can go to an event on one day, but can't get up and do the dishes the next day. Or I imagine if you have something like post-exertion malaise, you have to really negotiate with yourself. Like you're right. Nobody wants to get up and do the dishes or go do these things that we all have an avoidance of, but that is quite a different thing than knowing if I get up and do it, that's going to be all the energy I have for today. So why would I then want to exert my energy in that regard when I have to pick and choose from activities that could either bring joy or some stimulation or some activation or work?

20:15Ann Kelley: So I imagine there's a lot of preserving of one's energy, but then now you're having to, in the back of your mind, think, oh, how are people going to judge this if I don't get up and do my dishes? And as you're speaking, I know as we go towards the end, we're going to talk about how clinicians can be helpful, but I'm thinking about family members right now, or actually before we even go to family members, let's talk about the person going through that. Let's say a listener is out there and they're right now, or you have been through the journey so long that you actually have some terminology and some names and wow.

20:48Ann Kelley: And I can see how meaningful that must be. So I'm thinking about those that, you know, three out of four out there going, I have this chronic condition, maybe hopefully many of those out there have had it named and diabetes or, but so many are just having symptoms and they're painful and they're chronic and they're unnamed. What would you recommend? I think the first thing that comes to mind is always learning how to be with the symptoms. So if you're fatigued, it's, it's just like emotional work, right? If we learn how to be with our sadness, we can get through it. If we learn how to be with our anger, we can get through it.

21:24If we learn how to be with our fatigue, we can get through it. I think it's really important when you have chronic symptoms to know what the patterns are. And like I said, they change day to day. So it's not always like, oh morning feels like this and nighttime feels like this no but it's more like i'll use migraine for another example that is one i also live with and migraine there's something called a prodrome then there's the migraine attack and then there's a post-drome so after a while you start to realize oh that like weird irritability that i get like and there was no reason for it whatsoever that always happens 12 hours before a migraine attack.

22:03That is a prodrome symptom. Another prodrome symptom might be sensitive skin, extra sensitivity to light, sensitive to smell. There's many different symptoms that can happen, and each one of us is a little different, which is why in this work it's really important to know what does happen for me right before a migraine hits, a migraine attack. The migraine is a neurological condition that's always there. A migraine attack is the headache. And then post-drome, same thing. Post-drome could be like anywhere from like a few hours to a couple of days, maybe even three or four days, depending on the person.

22:41And so you may not have the exact same timeframe every time you get a migraine attack, but you will have like a fairly consistent pre-drome, post-attack, and then post-drome. And you learn how to take care of yourself in each of those phases. But that again, I mean, we could spend an entire episode just talking about that and how to take care of yourself. So it's so personalized, which is where the therapy comes in for folks who are dealing with this. You know, I think that's a fair question to ask, like, what does a therapist do who works with chronic illness? And the whole reason I even started my podcast when I did was because when a person was given a referral for a therapist, it was because we can't find anything with you.

23:24So this is stress related. At best, it was even, I believe that you are feeling this way and it's because of stress. So go see a therapist.

23:33Ann Kelley: And so then the therapist is like, oh, I'm now charged with uncovering the stress. And that's the answer that I've been. And yet you have somebody in front of you that likely by the time they're getting that referral has been through so many different processes of people not trusting them, not believing them. And then how do they even know how to trust their own body? Yep. And it's confusing for everyone because one of the most common questions I get from therapists and like my consultation groups and stuff is how do we know when we're treating the mind versus treating the body? Because when you do this work, and again, if a doctor says, go see a therapist, this is stress that's causing your physical symptoms.

24:10You just now tasked me with resolving their physical symptoms through mindset work. So it gets very confusing. I'm like, am I treating the mental health here or I'm treating the body? And so I make it very clear, like our scope is always mental health. And if some symptoms resolve when somebody's panic disorder is gone or their PTSD is gone or their health anxiety, fear of their body is gone and then their symptoms resolve, that's amazing. But like, that's never going to be in my treatment plan to resolve their symptoms. That's the doctor's treatment plan. I'm sorry.

24:46Ann Kelley: Well, how do you help them interact though? Like, because it is confusing, right? Is this individual fatigued and not getting out of bed because they cannot find any medical cause of that, is it depression? This person must be depressed. And what's so painful about that is having chronic symptoms is depressing and depression can create the fatigue. Like what would you recommend a therapist or to friends or to individuals out there when you're trying to sort through that kind of dilemma? Yeah. It is easier to answer this from the therapist role. one, what I'm always assessing for is like, do they want to be able to get up?

25:27You know, once we start to reach that, like, I don't even want to anymore, but even then I'm still assessing, is it because it's not worth it? Like the level of energy, the physical energy that it would take to accomplish that. And then the ramifications of, you know, what might happen, like a flare up or like a very physical thing might happen after you decide to go out with friends or, you know, participate in life, then to me, it still almost doesn't even matter really if like it's depression or it's the physical, it's more like we're doing grief work. We're doing acceptance work. We're working on pacing.

26:01Pacing is a big concept in the chronic illness world where I actually have a PT friend who has a good phrase for it. And she says, you push to it, not through it. So if we're working on getting someone out of bed again, whether it's because of fatigue or depression related fatigue. Either way, if it's depression first, it's still physically manifesting in their body. So I'm not going to try to get them to just get up and go to work. We're going to slowly titrate up and know that when you titrate up, they might have setbacks again, whether it's mental or physical. And I come from an acceptance and commitment therapy background.

26:39So in ACT, we don't really care oftentimes what the truth is. We care more so how you relate to what your thoughts are. So when you have this thought, what do you do next with it? Rather than, well, that thought's not helpful. So let's reframe it and find a better, more helpful one. That can be helpful sometimes for a lot of people that can be helpful, but in the chronic illness space, when you're trying to find helpful thoughts, and again, the medical system at large, your family members around you are all telling you there's really nothing wrong with you. You don't really have a lot of evidence to go off of, to be like, how do I make myself believe what the reality is?

27:17Because everybody else is telling you the reality is one thing and your body is saying there is a completely different reality here. So I like ACT for this work a lot because it doesn't care about what's true or not. It just cares about what the next best move is for you that's aligned with your values. So that's what I'm doing with clients a lot. I'm assessing for what's important to them. We might be doing a functional analysis where we're looking at transferable skills. So transferable skills is like, if you are a runner who can no longer run, but there's certain soft skills that go into running, there's persistence, there is learning, like, maybe the biomechanics of running.

28:02So maybe you can now do something else that's not running, because you can't physically do that, but uses the same kind of cognitive processes that it took you to learn how to be a runner. So that's a transferable skill. And even with that, there's a lot of grief work too. Just because you learn how to transfer your skills to something else doesn't mean life is amazing now. There's often, you often lose your community. You lose so much when you are no longer a part of worlds that you used to be a part of.

28:28Ann Kelley: That's huge, right? Just to stop and unpack that for a moment, how much of your identity when all of a sudden your functionality happens so differently.

28:49Ann Kelley: I wonder how many of you out there can relate to this. You finish your last session of the day, you're tired in a good way, then you open up your laptop to finish your notes, do your billing, answer client emails. Suddenly it's 8.30 at night. That used to be my experience a lot. Or truthfully, I'd just procrastinate and tell myself, I'll do it in the morning. Weeks would go by. It was so chaotic. Was the part about being a therapist I used to dread? I don't now. Sue practically begged me to start using simple practice. I thought it was going to be a really hard, complicated setup and time consuming.

29:21So I think I resisted, but it really wasn't.

29:24Ann Kelley: It ended up being very easy and it changed everything. So I love that they are now sponsoring our podcast. Simple Practice is an all-in-one EHR that is HIPAA compliant, high trust certified, and built specifically for therapists. It brings scheduling, billing, insurance, and client communication all into one place. You're not juggling multiple systems just to run your practice. My favorite feature is the automated billing. Once my clients are set up, billing just goes through at the end of the day, and you don't have to do anything nightly or weekly. As well as, I love the client communication, lease of information forms, private practice forms, anything that you want to have set up, you do it, it's ready to go, sent out before the first appointment.

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32:08Ann Kelley: So that's T-A-L-K-I-A-T-R-Y.com slash T-U to get matched in minutes. Tachiatry.com slash T-U. All right, let's jump back in.

32:29Ann Kelley: I have a child in my life who is going through long COVID, but had this whole identity. around who he was and is as a farmer and losing that capability was devastating. And it was an identity, just an identity drop. And so as you're talking about like trying to work with these different elements, each one that you just named is so powerful. I really am glad that you have a podcast and I really highly recommend people check out all the different topics because obviously we can't cover all the gifts you have to offer here. But just when you're talking about functional analysis and pacing, pacing is huge.

33:07Ann Kelley: I imagine for anyone dealing with anything that involves chronic fatigue, chronic fatigue syndrome, any of those things, which so often chronic conditions, right, involve some element of the fatigue of the body. And so each one that you name, I think what I'm getting out of this also is that the work is a process of trying to work with the individuals where they are and accepting it and believing them. And then the grief is you name that I wanted to slow down and unpack. That must be a really huge part of the process as an individual, as family members, and as a therapist to slow down for that part.

33:48Yeah. And this is important to tie into, you had mentioned earlier, like, could we go into my recovery story a little bit? And that is like, do we do grief? Like people feel like if I do grief work, then it means I'm just accepting that this is the way things are forever. And admittedly, if someone has died, then yes, you are accepting that they are gone forever. There is no, no bringing them back. But when you are living with a chronic illness, there does tend to be this kind of constant like hope that's dangled on a carrot in front of you. And then online, there's so many recovery stories. And I think that that's great in one way.

34:21And also not in a lot of other ways. So many people are online watching these recovery stories and they're like, okay, so if I just do what they did or right. And then we're not actually moving through the grief of it. Even if you recover, you're still in a period of your life right now where you have lost something. Let's grieve that. Let's move through that and feel that because it's here right now, whether you can or can't get better. Let's just say you can, right? Okay. But we still want to grieve what's happening right here and right now. Because if you don't, that emotional turmoil will follow you.

35:00Like at some point you will have to grapple with what you've lost. Again, even if you do get it back later. And it's very rare that somebody will get the same job back that they had, or, you know, these conditions, again, even with full recovery take years. So it's not going to look the same.

35:18Ann Kelley: And the focus on the acceptance of that, I really love the way you said that, because I can think about as a family member, how the fear of sitting with that grief and acceptance could feel like you were joining in the giving up. And that then we'd have to really look at our own resistance as parents, as friends about like, oh, wait, I have to look at my own stuff that comes up and my own grief of what's happening. And if I don't work on my own acceptance of it, then I'm like, wait, no, no, no. But don't like in my resistance, then, you know, somebody can't rely on me to be there with them in their grief.

35:56Ann Kelley: if I'm avoiding my own grief and staying in that ableistic, well, if you just do this, you're going to be fine. You must be a therapist or something. Yes, exactly. Yeah. I mean, that's exactly right. And I get it. I mean, I'm a parent too to younger kids, but when your kid is suffering, it's just like you want to do whatever you can to fix it right away. And there's so much fear that goes along with like, and what if they don't? what will happen if they don't get better? Or what will happen if I lean in too much? And so now am I disabling them? If I lean in too much and say, no, no, no, I'll get this, I'll get this, you know, then the fear, it feels like it's so hard to get it in the right way.

36:42Ann Kelley: And obviously you're never going to get it just the right way, but there could be the ignoring, or you have the fear of adding to the disabling kind of experience if you go in too much. How do you maintain that? What do you recommend about how to do this kind of balance? Yeah. There's this type of, it's called filial therapy. It's kind of like a parent coaching kind of therapy. And I am in a like group for it. And the therapist said, we always want to be one step behind our kids. So when they are, and I've always been like this with my daughter, she's four now, but when she was learning how to crawl, she would be on the couch and she would be like right at the edge, but she's extremely agile.

37:30She has been since the day she was born, like her physical abilities are out of this world. So I just always had this trust with her because I would observe her and I would watch her rather than kind of jumping in. And, you know, I think very understandably, a lot of parents when their kid is like learning how to walk or crawl, like you're like right there and you're like, Oh, Oh, like, don't even try this thing because you might fall. Whereas I'm one step behind. So I'm like, I'm right there. If she's about to fall, I'm I've got her, you know, I'm not going to let her fall. And also I'm not in front of her.

38:05She is exploring the world at her own pace. And I'm one step behind. I think that gets harder to do as your kids are adults, I'm sure, because it's like, you know, the responsibilities change so much. And also I would imagine there's a way you can take that same concept of just always staying one step behind and going with that, especially in the illness space, because they are researching or maybe they're not. Maybe they're not a researcher. Maybe they want you to do that for them. Maybe you are the researcher and maybe you feel like maybe I am enabling them by doing all this research and they're not even learning about their own condition.

38:42You know, I don't, it could be that way. And also like, what are they good at? What are they doing for themselves? And what are they working really hard at? And then can you take on that research? Do they listen to you? You know, do you come to them with research and they're like, you know, yes. And thank you for bringing that to me and now I'm going to go do that thing. It's such a give and take. It shouldn't just be all give, give, give, give, give. It really needs to be give and take. And I think that's how you learn to like do this dance.

39:11Ann Kelley: That's really, really helpful. And the one step behind is a beautiful example about how to be with somebody because to be one step behind, you have to be really observing and listening where they are and where they're going and what direction. And I can think of this even, you know, just with friendships, you know, somebody, everyone, either themselves, I've certainly had a period of time where I had a chronic back pain. It was so devastating because it just changed my whole self-identity. But I think the way that it hit me more than anything was the deepest amount of perspective shift in the people I knew that have dealt with lifelong chronic pain.

39:51Ann Kelley: And all of a sudden, you know, we haven't mentioned too much about chronic pain, but that is an exceptionally difficult experience to have. And mine was short-term. It was chronic, but it was short-term. It was not diagnosed for a long time. It was really, really scary. But I think of those that were with me by just one step behind and caring and believing me and listening, but not always trying to be the one with the answers, the step ahead of me. But if you just go do this or you just go do that, because half the time you've done six of them and somebody's great ideas. Yeah. And I think when you're attuned to people, you will know how and when to maybe sometimes offer advice.

40:33I know even with my own friendships, which I know my friends tend to be, I have the best friends in the world and they tend to be super extra cautious about what they say to me because they don't want to make me feel like a therapist to them. But like, you know, we're friends, right? And so, you know, even with my own friends, sometimes like I get a sense of when something that I do know, because this is such a niche expertise of mine, would be helpful for them. And so I just, I will give that to them. And then I will let them kind of take what they want from it. And I'm not like, you should do this.

41:05You must do this. I think that's where the advice goes wrong is, like you said, your own stuff comes up, your own fear, your own judgment. Maybe you think they're not doing enough. And so you're like, you don't want to judge your friend. And so you're like, if you just go do this, you'll be better. And then I won't have to feel this judgment that's happening inside of me or this fear or this, whatever it is. I know I've done it and I've watched it happen with the chronic kind of fatigue, et cetera, where people are so well-meaning, so loving, but you could feel their energy of wanting to give

41:39Ann Kelley: that advice or having the specialist that, no, this specialist is going to make all the difference and having to watch either my son or other individuals kind of have to leave themselves a little bit to listen to this for them instead of for him. You could feel the betterment. You can feel the heart in it and the hopefulness and that person made a difference for them. But I imagine it's so easy to lose sight of really being able to be a step behind and in tune with somebody instead of ahead of them and pulling them. because there's such a idea of like the lack of trust and what do they need? Is that a direction that really is in tune to them?

42:22And like with how much we go through on a day-to-day basis with our own chronic illness and you as my friend might get a fifth, a 5 % of that. And so then for me to share that 5 % and you to kind of just now say like, this thing is going to help. It's like, you don't even know the other 95%. How do you know that? Like you can't possibly know. And so all around is just like a really hard conversation when people are kind of trying to impose their wants onto your illness.

42:52Ann Kelley: So I guess as you're thinking about it as a therapist or being with somebody helping them navigate this space where they're going to run in to lots of likely well meaning people or either that they're going to avoid talking about it in order to avoid judgment. as a therapist, how would you work with that? What would you want other therapists to know when they have somebody sitting in front of them dealing with these kinds of experiences? I think it's really important. This sounds so simple, but like, please believe them. Just really believe them. They might be wrong about what their symptom means because quite frankly, they haven't had the doctors who knew enough to then explain enough.

43:37Otherwise they would have a proper diagnosis. But definitely believe their pain. Do not think that they're catastrophizing. Catastrophizing is one of those words that gets thrown around in the therapist space so much and in the physical therapy space too. They actually quite love that word because it encapsulates this idea that you think it's worse than it is. And if you just changed how you thought about it, you actually could do a little bit more than you think. And it is a bit about feedback loop. If you do a little bit more than you think, and you start to strengthen your body, then you might have a little bit less fatigue, or you might have a little bit less depending on the condition.

44:17So don't tell them they're catastrophizing though. Like if you really think that, then use your therapist skills to help them come to that conclusion on their own without leading them there. Like really do enough inquisition to get curious. And that's the other thing too, stay curious, like stay so curious and attuned to their verbal and nonverbal language. What do you notice when you say anything to them? Can you tell like when they're starting to get uncomfortable with something that you just said, do they go more quiet? Do they actually start talking a little bit faster? Like everyone is different.

44:55So try to understand what their defense mechanisms are and what their mechanisms are when they like let go in front of you what does that look like and then can you do more of that because eventually the truth their truth that they might not even be aware of will come out if they feel safe with you so your only job is to build safety

45:16Ann Kelley: that makes so much sense because in building safety i can't think about it from an attachment framework right in building that trust and that safety you're helping to build that connection to self and everything stems from that, doesn't that? And having a therapist that is doubting you and you can feel that or having a friend or a parent or you doubting you is a real disconnect and a feeling of lack of safety. So I really love where you went with that. Thank you. Yeah. I won't even use, like we have some assessments for how to assess if someone has somaticization, which is, you know, a physical manifestation of emotional experiences.

45:56I mean, I can't tell you how many folks are getting diagnosed with Ehlers-Danlos syndrome. We didn't really talk about that, but it goes hand in hand with all of these. There's a thing called the DECAD, and it's like all these kind of common cluster of diagnoses that commonly co-occur. And Ehlers-Danlos syndrome hypermobility type is marked by basically hypermobile joints, and you are, your joints are literally unstable in your body. So that causes a lot of pain. And I remember going through a chronic pain for EMDR. I'm not even an EMDR therapist, but it was like the only chronic pain in therapy kind of thing.

46:28So I took a weekend workshop on it. And the therapist said, you can know that their pain is from trauma if their pain bounces around. And lo and behold, like years later, I'm learning about hypermobile Ehlers-Danlos syndrome, which is marked by your joints being all lack. So of course it's like your pain is bumping around from different joint to different joint. It has nothing to do with trauma.

46:51Ann Kelley: And like you said, you know when it is. So this idea of certainty where you've decided as a therapist, this is what it is, or you've decided as a medical profession where you don't have the evidence that like it is nothing. That's what I hear your messages that is, is just listen, believe them. If it's bouncing around, trust that something's happening. And they might still need work on how to not be so fearful of and in their body, but you cannot do that if you don't believe that their pain is like real and accurate to begin with. Yes. There's so much more to talk about, but you've mentioned, so I am going to refer people both to your podcast and we'll talk a little bit more about that.

47:33Ann Kelley: That will be in the show notes, but you mentioned the bias right we come of a very ableistic society and you talked about like the differences that happen and i know that we don't have very much time but can you tap that for those individuals again i'm thinking about people out there listening that have these chronic things and i'm thinking about even like the whole finally the new information about hormone therapy and how often women are walking around and going to doctors saying that we have these kind of symptoms of fatigue and loss of sexual interest and all these things and being dismissed and there's nothing you can do.

48:11Ann Kelley: And just how often, especially women, tend to be dismissed. Could you talk about that just a bit so that you can also talk to that listener out there that feels like they're being dismissed and they need to be heard? Yeah. So to the therapist who needs to be aware of their biases, one, I want to say that the, you know, the Harvard Implicit Association tests, they have a disability one. So you can go and take that implicit bias test and see what comes up for you around your biases that you don't even know you have. I might even still have some if I went and took that test today because it's so pervasive in our culture.

48:46So you have as therapists, we have to be constantly aware of our biases, not thinking that we don't have any because that is dangerous. So be aware and reflect on that. There's a really good book by Judith Herman, and she talks about the history of hysteria, the diagnosis of hysteria, and how when Freud was doing all of his work with these women who were all reporting sexual abuse by their fathers and grandfathers and uncles, that he had this revelation that their hysteria was caused by their trauma as children from the sexual abuse. And when he started to write about it and talk about it and realize, oh, the fathers are like my client's father, like my friends, like this is my inner circle.

49:37This is people I know. And then all of a sudden he turned on his clients and said, this is made up. This is a figment of your imagination. This is your trauma talking. So it's a long history of women not being believed. And I think we're trying really hard right now to really overcome that. And there are even some therapy modalities right now that are like doing, in my opinion, some damage around that and trying to kind of take us backwards a little bit. But I think we have, like I said, really, really great science that is emerging from the long COVID research and hopefully continues to emerge.

50:13And then we can get these biomedical answers to fatigue and emotional roller coasters, if you will. And those biomedical answers will help validate the experiences that we've all known were okay and accurate inside of us all along.

50:30Ann Kelley: that is such a great trajectory and that individuals out there doing the work to start to believe women out there about the things that their bodies are going through and the idea of hysteria yeah i really am glad you brought that in and yeah i think that seems like the biggest message in that trust yourself and if you're experiencing it if you're experiencing something really, really listen and care and seek help and seek help for the physical symptoms that you're having rather than just deciding that it is your own weakness of will or all the messages we get that it's in your head or it's in your body and you should be able to overcome.

51:13Yeah. If anybody needs one more example, I'll give the example of scurvy. Scurvy, you know, the vitamin C deficiency, the pirates condition, before they knew what caused scurvy, it was called a lack of morals or a lack of will, because they didn't understand why some people were getting scurvy on this long track. So not just women, right? It also happened to men, but they were weak men. They were the ones who were not manly enough or whatever. So this is like, again, just It's well-documented. When we don't understand something, we attribute it to lack of morals, lack of willpower, lack of strength.

51:51And yeah, once we were able, I mean, that was an easy one, right? It was like, okay, give them some vitamin C, give them limes on their journey. And now they're like literally that cured scurvy. We're actually seeing a lot of some scurvy come back with the increase of like carnivore diet and stuff like that. But which is people in the chronic illness space can go down rabbit holes with trying to cure themselves. And that's one of them. But yeah, scurvy. It used to be called a lack of willpower.

52:18Ann Kelley: You mentioned that people having chronic illness, like they will go down just all sorts of rabbit holes because you're, we're so wanting to, like you said, have the energy to do the dishes. Like nobody wants to do the dishes. Everybody wants the energy to do the dishes, right? So there's a big difference, right? People want the energy to go see friends, but they may not have it so that then they don't want to go see friends, right? So it's just such a distinct difference. you know then you're getting the messaging that if you actually speak and talk about this you're weak-willed that's true there are some programs there are some prominent pain programs in the country right now that say you are not allowed to talk about your illness while you're here you cannot talk about your symptoms you can't even call your symptoms symptoms you must call them sensations or don't even talk about them at all that's what best like it's being behaviorally done.

53:09Clients in these programs are getting punished. Their phone will get taken away or whatever if they break one of these rules. And then when they leave these programs, they are terrified for years to talk about their illness and care is delayed, which is if you are dealing with a chronic illness and you need physical medical support and it goes delayed, like diabetes, if you go untreated for diabetes for many years, you can do irreparable harm to your body. Same thing with all of these other conditions. It's just not as like clearly delineated the way it is with diabetes.

53:47Ann Kelley: Well, and you mentioned that long COVID has helped, right? Like, and that's something that happened, such a marked site. And then there's so many non-believers about long COVID for so many years. And now it feels like that has become much more, is that in your experience too, and accepted this is really happening in the medical profession is it's not in somebody's head. And it's such a sad thing that's happened across the world. And at least the outcome of that is deeper research into these things that have been happening all along for so many people with chronic fatigue, et cetera, that have had these kind of rebound experiences.

54:29Ann Kelley: And now we have some words and terminology. You've got a conference coming up, so we've got to wrap, but I really want you to talk about your conference because it's for therapists out there. I've done a little bit of listening to some of the excerpts about trying to help therapists understand why it would be so helpful. And I'm really excited about it. Could you tell therapists out there about the conference? Not just for therapists, right? It's for all sorts of... No, it is just for therapists. Oh, it is. Okay. But I do have other, like I have a summit that I haven't actually posted about yet.

54:59That'll be early next, it's 2027, and that will be a patient and clinician community event. But the 2027 Chronic Illness Therapist Conference is October 8th and 9th, 2027. And it's for PTs, OTs, RDs, and therapists who specialize or want to specialize in chronic illness. And like we said, 75 % of the country has at least one. So it's really not a niche topic, but it is still a specialty topic. As you said, like everything we talked about here, we could have talked about at least 12 of these topics like for an hour each. So it does take a lot of time to understand and to grasp what we're talking about, even though it is such a prevalent issue.

55:40So the conference seeks to address that as well as my ongoing, I do ongoing continuing ed throughout the year and clinical consultation. Every single month, we do clinical consultation for two hours every third Friday of the month. And my approach is very disability justice-informed acceptance and commitment therapy with some somatic just awareness kind of blended in there, but nothing curative. I think that's my most important point.

56:06Ann Kelley: And one of the things I heard as you talked about this conference, it was so inspiring for anyone that's putting on a conference of any sort. I really highly recommend that you listen to some of the excerpts that you talked about on your podcast where you were talking about how to make a conference accessible to those that so desperately want to attend a conference and maybe they don't have the energy or they have overstimulation for sound or all sorts of different disabilities that need consideration. And we so often forget that. And I thought you did a beautiful talk you know how to get people there and how to have support peers come with you so I just really encourage people to go listen to some of the things that you talk about for this conference but it was really inspiring thank you yeah we have everything listed on the website of how we support and accommodate we say accommodations built in not requested but you can of course request more everything from like low sensory lights in the conference hall to we had a really cool sensory room.

57:10Everything is a hybrid. So it's virtual and in person. And so if you're also just not feeling well, and you came in person, and you want to go to your hotel room and continue watching virtually, you can absolutely do that. Like, we had floor seating, we had everything, we had one of our members, or attendees was blind. So we assigned him a volunteer to like help throughout. And we just try to do our best to make sure that it is a universal design from the start.

57:37Ann Kelley: Very inspiring. Thank you. All right. Well, all of what you spoke about is going to be in our show notes. So if you want to have more information of anything that Destiny talked about, check out our show notes. And if, Destiny, if somebody wants to find you to do a consultation group or just to do a consultation, how could they find you? Yeah, everything is listed on thechronicillnesstherapist.com. And then I do a lot of Instagram, the.chronicillnesstherapist. Okay, great. And check out her podcast. Yes. Yes, that will also be in our show notes. Amazing. Thank you so much. Thank you. Thank you for joining us.

58:13Ann Kelley: All right. Thank you guys for joining us. Please drop us a rate or review on this. So much great information. Pass it on to people that you know could really benefit from it. And check out the show notes and the conference coming up. Thanks so much for joining us. And we'll see you around the bin.

58:37Ann Kelley: Therapist Uncensored is hosted by Ann Kelly and Sue Marriott. This podcast is edited by Jack Anderson.