Managing Chronic Illness – What You Don’t Know Does Hurt Me
A Mental Health Podcast Hosted by Karen Conlon, LCSW
We push beyond the traditional therapy format to demystify, debunk, and destigmatize therapy. Hosted by Karen Conlon, LCSW, CCATP.
Managing a chronic illness impacts every facet of life: from work to dating, to parenting, and everything in between.
If you’ve dealt with chronic illness, especially an invisible illness, it can be hard to effectively communicate with those around you about your needs. If you look good on the outside, people might think you feel okay on the inside. Unfortunately, sometimes that couldn’t be further from the truth.
In this episode, my colleague Rachel Kaplan, LCSW, and I are talking about all things chronic illness – from spoon theory to how it can impact various facets of people’s lives.
What You’ll Learn
- How a chronic illness diagnosis can alter someone’s way of life completely, how they see themselves, and how they relate to others
- About toxic positivity, and how sometimes those with chronic illness can do it to themselves
- How to better explain to someone that doesn’t have a chronic illness what it’s like to live with one
- That invisible illnesses can be some of the hardest to deal with
- If you know someone with a chronic illness, how you can better support them
Podcast Resources for Managing A Chronic Illness
Karen Conlon, LCSW: Hello and welcome to the So, How’s Therapy? Podcast, a podcast where we push beyond the traditional therapy format to demystify, debunk and destigmatize therapy. I’m your host, Karen Conlon. And in today’s episode, we’re talking all about managing chronic illness and how what friends or neighbors or family members don’t know actually does hurt people who are dealing with chronic health issues. Today, I’m going to be speaking to Rachel Kaplan. And Rachel is a licensed clinical social worker with vast experience working with folks who are dealing with chronic illness. We’re going to chat today about all the things or most of the things that we need to know about dealing with chronic illness and also how it is helpful for their loved ones to know this as well, so that they can support their loved ones who are dealing with stress with chronic illness as much as possible. So Rachel, welcome to the podcast. How are you?
Rachel Kaplan, LCSW: Good. Thanks so much for having me.
Introducing Rachel Kaplan, LCSW
Karen Conlon, LCSW: Oh my gosh, I’m so glad that you were able to make it today. Rachel, you work with chronic illness, can you tell us a little bit about your experience with chronic illness and how you know so much about it?
Rachel Kaplan, LCSW: Sure. So I work at a private practice doing psychotherapy individually with a lot of young adults and older adults who have a chronic illness, helping them to manage all of the very many things that come with dealing with chronic illness in their day-to-day lives. In addition to that, I’ve actually worked at one of the major hospitals in New York City for over five years now, also working with a lot of chronically ill patients there, helping them to adjust when they get a new diagnosis, how to live life with their diagnosis, how to help with speaking with families about what’s going on. And I follow them long-term there with all the things that come with living with something chronic like this. So I’ve worked a lot with all different kinds of people with different kinds of medical issues and just helping to support them through that process.
Karen Conlon, LCSW: Rachel, when you’re talking about all different types of medical and chronic illnesses, I mean, each different type of chronic illness comes with its own set of issues, but are there things that maybe they’re across the board for everyone, regardless of whether it is diabetes or cancer or inflammatory bowel disease or IBS, regardless of what it is that they’re dealing with. I mean, one of the things that I have found is that dealing with a chronic illness does alter the way that people live their lives, how they see themselves, and even how they relate to others, sometimes even the way others relate to them. Have you found that there are things that across the board present themselves to anyone regardless of what they’re dealing with?
Chronic Illness Means Lots of Adjustments
Rachel Kaplan, LCSW: Yeah, absolutely. I would say regardless of what the chronic illness is and despite the fact that there are smaller aspects of life that vary a lot depending on what you’re dealing with, the medications that you have to take or the treatment that you have to go through or how it really impacts your day-to-day life, there’s so much to adjust to when you’re dealing with something that’s impacting every aspect of your life. You’re adjusting first of all to the diagnosis itself and adjusting to the fact that this is something chronic that you’re going to have to live with the rest of your life. It doesn’t matter what it is. That’s still so difficult. And there’s so much that comes with that, so much emotionally comes up, so complicated with whatever circumstances you have in your life, whether that’s your job, your role in your family, responsibilities that you have adjusting.
So waking up each day and what do I have to do to get through the day-to-day? There’s so many small little decisions that come moment to moment once you’re living with a chronic illness that people don’t necessarily appreciate or understand unless they’re living with something like that. And I don’t think it matters if it’s a cardiac condition, IBD, there’s so much that comes with chronic illness with a chronic piece itself, I think is what’s so challenging about it, that’s something that you’re going to have to live with for the rest of your life. And everything that comes up with that, regardless of what the smaller circumstances are, I think is the same for everyone.
Karen Conlon, LCSW: Well, and talking about then those things that just are across the board, one of those things that you mentioned was just really looking at the details, those little things that now, before didn’t, I don’t know, we never even thought about, but now we have to think about, it’s almost like a, I don’t know, you become somewhat of a project manager when you’re having to manage so many things. Can you give some examples like some of the things that have come up for some of you, the patients that you’ve worked with in this respect, where like now all of a sudden these little things actually become big things that’s all over again?
The Day-To-Day Impact of Chronic Illness
Rachel Kaplan, LCSW: Yeah. I think it’s more important to think about this because when we think about illness, we think of some of the bigger picture issues that people have to deal with, but it’s the small day-to-day things that are impacted that I think make it so hard to live with on a regular basis.
So small things that we take for granted as healthy people, or maybe before you had a chronic illness and have the diagnosis, you didn’t think twice about some of these things, but it even comes down to you wake up in the morning, what do I have to do today to get through the day? How much energy do I have to have? What things do I have to say no to? What boundaries do I have to set that I never had to think about before? We might be saying no to social plans, to being the one to cook dinner, to being the one to pick up your kid, small things that just felt so commonplace and we never thought twice about, now we have to think about, I only have this much energy in the day and how do I expand that? Small things like, what do I need to eat today? What do I need to put in my bag when I leave the house? Do I need a change of clothes in case I get sick? Do I need medications with me? Do I need to set timers to remind myself of these things?
There’s so many factors on top of whatever the normal stresses are day-to-day life that all of us navigate that are now amplifying how stressful a normal day is. Things that we just took for granted and didn’t appreciate that came so naturally to us before, but small things like making dinner or being the one responsible for household duties, doing chores, it takes so much more energy and so much more foresight before doing any of these things and making plans when you have a chronic illness and know that you don’t have unlimited energy, you are going to need to take medications, you may feel really sick unexpectedly. What if you do need to call out from work because you just don’t have the energy to go in that day or you’re having some kind of flare-up or exacerbation of your symptoms? People don’t think about how frequent it is that we make little decisions all day long until suddenly those decisions come with so much more.
Karen Conlon, LCSW: Oh my gosh. I mean, everything that you just mentioned, if you look at just your regular everyday life, I mean, whether your parents are not getting up in the morning, deciding what to wear, getting yourself ready for the day, having breakfast, making breakfast for yourself or not, coffee or whatever as you do. If you have a family, then you’re doing that as well, getting everybody out the door pre-COVID or maybe post-COVID is making sure that there’s enough bandwidth for everybody to be remote while you’re doing what you’re doing working, there’s a lunch break that you need to take care of if people are working at home, et cetera, et cetera. And so, man, as you were saying, all this stuff, I mean literally my energy was getting depleted and I’m just sitting here talking to you via Zoom.
So when you have just regular working conditions without dealing with a chronic illness, and now we’re going to tack on a chronic illness that can or may get in the way of your energy levels, I mean, when you were talking about the smaller stuff, what about work? What about not just getting to work, focusing on work, but what about the need to work because you’ve got to pay medical bills? I mean, is that something that comes up that you’ve seen that comes up as a worry for individuals or for their families as well?
Chronic Illness and Your Career
Rachel Kaplan, LCSW: Definitely. There’s so much that comes with work and your career and being employed. Of course, there’s the financial aspect of it, meaning to provide for your family if you contribute to your family’s household income, needing health insurance through your employer. Now that you’ve chronic illness, we maybe never have even really thought so much about how empowering health insurance is other than for some of our regular annual appointments. You need that health insurance when you have a chronic illness, and a lot of times that’s tied to people’s jobs. And from that, there’s the whole piece of how much of our identity is tied into being productive, serving the role in society to be doing something every day, and when that’s taken away from somebody or threatened. And I think a lot of it too, when you first are diagnosed or as your disease progresses or whatever stage it might be in a chronic illness, the fear of how your ability to work is going to be impacted and how it’s going to change. It’s really an identity issue.
Karen Conlon, LCSW: It’s this role that we all feel that, again, we don’t necessarily think about because it’s just, we get up in the morning, we go to work, everyone who’s an adult for the most part, if you can and you want to, has a job. It’s not something that’s so simple when you suddenly have a chronic illness. And so I think the fear of how are you going to be able to contribute to your family or to society, these pieces of our identity that are roles that we’re so used to filling are suddenly threatened with this chronic illness. It’s not such a given that we’re going to be able to make it through the meeting without having to run to the bathroom, or even, you mentioned, we had this plan today to meet at the certain time and have this meeting together, for someone with chronic illness, I don’t know how I’m going to feel by the afternoon. And that’s not something that the external world is going to necessarily let you be flexible and it’s not going to understand, or you may not want to ask for those exceptions.
Rachel Kaplan, LCSW: I think that’s a piece that’s really complicated too, is people are worried, what are my coworkers going to think if I keep calling out sick or I need this other procedure and I need to take a leave. Something that’s coming up a lot now with the clients I’m working with, especially during COVID, which is unique to this time is, I’ve taken a lot of days off because my nanny called out sick or my kid’s school was closed because there was a COVID case, now I’m really not feeling well and I want a few days off, or I might get a procedure and I’m going to need to take a leave. And my coworkers may think I’m taking advantage of the policy or they may look at me and think, oh, that person’s just taking advantage, they don’t want to come in and be exposed to the pandemic.
So there’s this whole other complicated issue now that’s coming up as well as is, what are my coworkers going to think, what’s my employer going to think, are they going to be looking at this? And do I want to disclose to them really how hard my day-to-day life is?
Loss, Grief, and Mourning in Chronic Illness
Karen Conlon, LCSW: I mean, I think you’ve brought up three separate points that are incredibly important and that each deserve a few minutes of attention. First and foremost is the identity loss. I mean, there is undoubtedly a certain amount of grief and mourning when you’re dealing, especially if you have a chronic illness or an illness that where there’s no cure, and you’re maybe in remission or maybe you’re not or managing, or maybe you’re not, but there is a certain loss of identity, there’s a certain loss of who I was, who I was meant to be, who I was planning on being.
And I think that people oftentimes don’t get that even themselves, first of all, going through it. Certain times, a lot of times, there’s a level of depression that happens, low-level depression, irritability, a lot of irritability. And a lot of times there’s not a real big understanding that they are grieving the loss of identity and needing to make these changes that, by the way, are not by choice. That’s the other thing like I have had to change my identity to a certain degree, not by choice. So there’s this also feeling of there’s like this loss of control.
Rachel Kaplan, LCSW: There’s so much loss. I think that’s so important. I don’t think people give themselves the space or the time to really have this grieving process. I think grief is something that in our society we think about, it’s just when you lose a loved one or someone dies. This is a significant loss and it needs appropriate time and space to allow a person to mourn that. You’re right, the losses of not only what life was before the diagnosis, but the loss of things that you were maybe planning for your future that are now not possible anymore. Without letting yourself really go through those stages and feel that process in a way that you can be compassionate with yourself and allow that and give yourself that permission, the rest of our society doesn’t really understand what it’s like to live with chronic illness.
And once you’re past that crisis stage, where you’re in the hospital where you get the diagnosis, all that support is there and all these people are offering to help. People get back to their lives. And they adjust to the fact that this diagnosis and they forget, and they can’t necessarily see it. They don’t know the nuances of day-to-day, what’s happening for you or how hard it is. And so people, a lot of people, I work with, clients that I work with in the practice, but also patients at the hospital, this expectation that you’re supposed to just adjust to it and get back to some sense of normalcy or you look fine or you look great, or maybe you lost weight because of your illness, and they say, “Oh, you look so great, now you must be feeling great.” They don’t understand what’s really going on. There has to be space for the grief.
And I think people often skip over this really important step because either they don’t want to go there because it feels too overwhelming and emotional or they think they shouldn’t and they, should is a word I hear a lot, I should be okay, I shouldn’t be adjusting to it, I should, they’ll be upset or sad or mourning the fact that I have to live with this everyone else has gone back to their normal lives. This grief piece is so important, I think so often overlooked.
Karen Conlon, LCSW: Well, and then that second point was the other one that you just mentioned, now is with those illnesses where you look good or you look “normal” to the outside world, and like you said, unless there’s this crisis where unless it’s something really obvious, it’s really hard.
I think, I don’t know, I feel like it’s really hard sometimes for people to empathize or be able to even accept, okay, I may not see it, but I believe you. And the tendency oftentimes with families, and you tell me maybe if you’ve had any similar experiences, has been to tell people, but well, but tomorrow’s another day or it’s okay. Well, you look great. Oh my gosh, you’ve lost all this way, you look amazing. And not really thinking that it’s because, I don’t know there’s something going on health-wise that’s really not allowing them to keep themselves at a healthy weight and the weight loss is actually as a result of something quite dangerous or precarious. And so you brought up this really great point, again, around employers or loved ones. Life goes on after the crisis and that person is left there looking okay and being expected to go on.
Rachel Kaplan, LCSW: We call this invisible illness. So people can’t see that anything’s wrong if you’re not walking around with a cast on, maybe you don’t look as sick as you did when you were first in crisis or in these periods when you do have a flare up or an exacerbation of whatever’s going on with you. And when you’re not in crisis, you’re not in the hospital or it’s not new, people adjust and they expect you to as well. And it’s people who are well-meaning, they say these things, because they want to support you, they want to be there for you, but they don’t know how to. And they don’t really understand what’s going on behind the closed doors for you.
And what’s hard here is that people don’t want to necessarily share this, I don’t want to tell my employer I’m not feeling well. Oftentimes I hear, I get sick of telling my family who are there for me and I trust them and I’m comfortable with, but I don’t want to tell my spouse or my kid or my sister or brother that I’m not feeling well. I’m sick of saying I don’t feel well or I don’t have the energy to do this, or I need to cancel these plans because I don’t think I’m going to feel up to doing that. People don’t want to keep telling their family or their loved one or their employers that they’re in this role now as they see themselves often as I’m a sick person now, I don’t want this to be my new identity.
And so they don’t also allow themselves the space to really advocate for what they need. And this invisible piece, this invisible illness is really challenging too, because what’s going on internally, we have to hide from the outside world people feel a lot of times. And so what you’re showing externally is different than your internal experience, and that can feel so isolating and make people feel so misunderstood. And it makes it so much harder to then give yourself the space and the compassion and the patients that you need when you aren’t able to communicate to others what your needs really are.
Karen Conlon, LCSW: So invisible illness, I mean, this is one of those things that people, one of those terms, I should say, that people don’t really hear, but once you hear it, you get it, because it’s everything that you just said, it is people going on with their lives and not really seeing or understanding that you still are sick just because you don’t look that way. It is going to your work and your managers and coworkers expecting you to show up 150% because you look like you should be able to do that. And the other thing, too, that you mentioned that, again, is such a great point, is this thought of people wanting to support you, people wanting to be there for you, and sometimes, not on purpose, what they actually do is invalidate your experience with something that we call toxic positivity. Tell me what you’ve heard, what are some examples of toxic positivity that you’ve heard either expressed by your patients or they maybe complaining that they’ve heard?
Rachel Kaplan, LCSW: Sure. I think this is a theme that comes up a lot for people with chronic illness. And I’ve heard it a lot, not just with people giving you toxic positivity or encouraging that, but people expecting that of themselves, these people who are living with chronic illness, that I need to go out with a smile on my face, I need to act like everything’s fine and just get through the day. And then when I get home, maybe I’ll fall apart then, or maybe I’ll feel exhausted and sick and maybe the next day, I won’t be able to participate in some social things I wanted to do or taking care of myself in ways that I need, but I need to be able to try to go out there and meet these expectations from the external world.
And so this toxic positivity, I think it’s a really powerful term when people hear that and have a name for what they’ve been trying to do, it’s that same internal versus external, what I’m going through internally, the struggle I’m having, how hard each day is, every decision and every aspect of my life that is always tied into my chronic illness all the time, always in the back of my head, no matter what I’m doing, even if I’m having fun with friends or making travel plans, every decision is now layered with this, what do I need to do for my chronic illness? But that they need to hide that from the external world. They need to act like they’re positive and they’re coping fine and everything’s easy. And it is toxic because that expectation is not realistic. It’s not possible. And at a certain point, what I hear from a lot of people is just how draining it is, how often it feels to have to go out into the world with a happy face, acting like I’m doing fine when really I’m struggling.
And even for people who’ve lived with chronic illness for a long time in most days do have a handle on it and are adjusted to some of the things that come with it. It’s still so hard. And they don’t feel like they’re able to show that to other people because they don’t want to burden them with it or inconvenience them with it. I think that’s another theme that really ties into this invisible illness and this toxic positivity is this fear of being a burden to others or inconveniencing others.
And that comes up a lot with the people I work with. They don’t want to have to ask for help. They, again, once those support systems have gone to the wayside because you’re not in crisis and they’re adjusted to it doesn’t mean they’re not there for you, but you have to seek out that help a lot of times yourselves, you need to ask for help, you need to tell them, I just don’t have the energy for this new project at work or I can’t take this responsibility at home, or I can’t be involved in these plans because of X, Y, and Z. And it’s hard to always feel like you’re in this role of needing to ask for help and worrying how it’s going to burden other people.
And so I think those three themes really tie into each other and make it just so hard to know how to participate in life in any sense of this new normal that you’re navigating with what you need from yourself and what you’re able and really able to and want to and can amidst all of the other challenges now give to the rest of the world and to everyone else in your life.
Karen Conlon, LCSW: Yeah. I mean, you’re so right. This is a theme, they’re all intertwined, one impacts the other. And this particular theme is one that I think you said it right, it is draining and exhausting because when the people closest to you are saying to, “Oh, but everything’s going to be fine, tomorrow’s another day. If you just get up, you’ll see how in an hour you’ll be just fine.” Then you feel like you have to live up to the expectations. So it’s no longer about you. Now it is about really living up to those expectations.
And I think it’s important to mention though, in support of those people that are trying to help, oftentimes the reason that family members or loved ones, especially I see this with parents a lot, that they have a hard time validating or just being there and containing the space for them, for their loved ones, for their kids, for their spouses is because there’s a fear that, oh my gosh, if I agree, then I am contributing for them going down this rabbit hole. If I agree this sucks, today is horrible. I get it. You feel, yeah, this is not fun. This is not a happy time. There’s this fear that if I agree, I am now contributing and it’s quite the contrary, isn’t it?
What happens in your experience, Rachel, when someone is able to, maybe manage their own anxiety around it and be there for the other person by just simply being there for them? What do you think, in your opinion, what happens, what’s the experience for the patient or for the person dealing with the chronic illness when they have someone just be able to not try to make it better?
It’s Okay To Not Look For A Silver Lining
Rachel Kaplan, LCSW: I think what people really need to hear is that it’s okay that this is hard, it’s okay that there is nothing that we can do about it, and I’m just going to sit here with you in this uncomfortable place. And I think that family members and loved ones who mean well, who want to be there for you, who often participate in this toxic positivity, it’s because it’s kind of scary to go to this place of vulnerability and real empathy, which is, I can imagine what you’re going through, I don’t know what you’re going through. Nobody knows what anyone with any chronic illness is going through because it’s such a unique experience, but I’m here with you and it’s okay that it’s hard and I’m not going to try to sugar coat it, or you don’t have to always find the silver linings and see the positive in it and feel grateful that you’re okay and that you’re here.
I hear this a lot too, just be grateful for what you have. And while that’s all well and good, and it’s important to have a perspective, there has to be space to just be sad and upset and frustrated and angry and whatever it is that’s coming up emotionally for what’s changed in your life and what’s been taken from you. And I think people don’t know how to express that and are really uncomfortable going there. And so when you can finally bring down that wall that we have that feels a little more comfortable, let’s be positive, let’s think about tomorrow, you’re doing great, when people can go to this other place with you of vulnerability and really allow you to just feel what you’re feeling, I think it also helps with giving you permission, helps give yourself permission to feel that way.
And I think what’s hard here and really important for people with chronic illness and their family members to hear is, I hear a lot of people say, well, if I let myself go to this place of feeling emotional or “breaking down”, or just feeling really sad and upset and angry, I’m not going to be able to cope with it. And they fear if they allow this emotional piece to really come up for them and really process it. And when we say process it, it doesn’t mean just think about it or talk about it, but really let yourself feel whatever’s coming up for you without judging it or trying to control it or trying to put a positive spin on it, that they’re not going to be able to come out of that. And that’s just not true.
I understand that a lot of people fear that place if they haven’t gone there and they aren’t historically people who are really comfortable with strong emotions, but just because you have a really hard day or week or month or however long it is that you’re allowing yourself to feel emotional about what you’re going through, it doesn’t mean you’re not going to be able to cope with it, it doesn’t mean other days you’re not going to feel more positive or more grateful. And you have to be able to tolerate both. It’s not either or.
And I hear this a lot from people that they have this expectation of themselves, whether that’s from other people or just something innately that comes up for them, that if they’re upset or angry or having a hard time or feeling sad, it means they’re not grateful and appreciative and trying to be positive, but you can be both. You can be upset and angry and still be coping okay and still, under all of that, grateful that you’re alive or that you have medicine or that you’re able to get through this. And I think that’s such an important thing for people to realize.
Psychoeducation Around Chronic Illness
Karen Conlon, LCSW: This reminds me about how important it is for us as mental health practitioners to provide psychoeducation to people about things that can help them learn how to be self advocates, because in order to tolerate, learn how to tolerate both things, they have to go through the experience of discomfort and feeling anger or any type of emotion that they’ve been trying to avoid because getting through that is how you do it. And a lot of times it requires psychoeducation also, not just for the patient or client, but also so that they can pass that on to their loved ones. A lot of times they don’t know, we don’t know how to articulate what it is that’s happening because we don’t have experience in even trying to describe it in the first place.
So the first thing that comes to mind to me is medication side effects. Also, if you have co-occurring illnesses, diabetes or some other, maybe not chronic illness, but like joint pain or even a common cold that, for some people would just be a common cold, for you, it could mean that now, if you’re on an immunosuppressed therapy or immunosuppression therapy or some other kind of medication, now you can’t take other things that you might normally do to help you with your cold. And I can’t think of anything right now, but the point I’m trying to make here is that anything that we normally take for granted, for someone who’s suffering with a chronic illness, becomes a big deal and needing to check with their doctor. If I have this type of tea, is that contraindicatory to whatever medication I’m taking? It’s just not that simple. And so psychoeducation about that, about medication side effects so that they can also explain to their loved ones.
Karen Conlon, LCSW: The other thing I think about is the spoons theory. And the spoons theory is a theory that was created by the experiences, the personal experiences of Christine Miserandino, who was a woman or is a woman who suffered from her own chronic illnesses from a very young age. And she never really knew how to explain the fatigue because she was one of these people that always looked okay.
And then one day, she was sitting down at a cafe with her friend. And her friend, and this was in after college and her friend asked her, what’s it like to be ill the way that you are? And she looked around and grabbed a few spoons and said, okay. And she put these spoons on the table and said, okay, imagine that these spoons, and I believe there were 12 spoons, but imagine that these spoons, each one of these represents a unit of energy. And when I get up in the morning, everything that I do takes up one, two or three spoons. And let’s say that I need all 12 spoons to get through the day, but getting up in the morning, brushing my teeth, that’s one spoon. And then maybe working out, that’s already maybe four spoons, getting to work, that’s another four spoons. And you may not be done with the day by the time you’ve already used up your 12 units of energy.
So coping with a chronic illness involves psychoeducation, understanding, not just of your illness, but the side effects of medications. And then also having tools like this to explain to people, because self-advocacy is so important. What have you experienced or what have your patients experience, what have you seen in terms of dealing with limited energy and that ability to explain to people what’s going on, even when they don’t look like anything is going on?
Chronic Illness Forces You To Work Within Limited Resources
Rachel Kaplan, LCSW: I think this theory and this way to conceptualize the limited amount of resources that we intrinsically have and people with chronic illness intrinsically have or don’t have is really so useful because what’s hard about explaining it oftentimes to other people is its hard to even articulate for themselves what it’s like to live with this. People don’t get asked that a lot, what is it really like, day-to-day, to live with a chronic illness? And so sometimes it’s hard to even answer that question because it’s something that either you’ve gotten used to it and you don’t think so much about how it’s impacting you because you haven’t taken a moment to just step back and think about what your life used to be like, or how much this is part of your everyday life now. So people don’t get asked this a lot and it’s hard to even articulate for ourselves.
So I think this is such a great technique for thinking about what it’s like to live with chronic illness and all of the small things that it impacts and then explaining it to others, because I think something that’s just so unique to living with chronic illness is that the expectations from the outside world don’t necessarily change for you, especially when we’re talking about one of these invisible illnesses, which is very common of most chronic illness. Of course, some people have visible disabilities, but a lot of people don’t, most people that I work with don’t. And so the expectations don’t change, you’re still expected to participate in life in a way that’s “normal”.
So being able to conceptualize the fact that your resources are more limited and also to help put this other person that you’re disclosing this to or feel comfortable speaking with us about so that they can think about what a day in your life is like. They didn’t think about how hard it is just to get in the shower, get out of the shower, put on your clothes for the day and get dressed and go out of the house, and how many spoons does that take? I think with this model, it outlines a little bit how many spoons are needed for each task. And again, the person you’re explaining this to can really think for a moment and really empathize in that way what it’s like to live with chronic illness, all of these things that go unappreciated and taken for granted, how much energy that takes for you as a person with a chronic illness to participate in? And that you have to think ahead and plan for your day and what that is going to look like because you know it’s a limited resource, your energy level and how much you can do.
And so I think this helps with that empathy piece and with explaining to someone, this is how vulnerable I feel walking out of the house, because I know I only have this many spoons left, but this many things I’m expected to do today, and that has to always be a factor in every part of my functioning.
Karen Conlon, LCSW: Yeah. And in terms of loved ones and specifically being able to take something like this, like the spoons theory and started discussion using that as a basis, and then being able to talk about the emotional impact that happens when you’re dealing with a chronic illness or chronic disease how worries and frustrations are tenfold while the anger that you might be internalizing and guilt, like you said, around not wanting to be a burden, the impact on daily activities, feeling burdensome, and because maybe someone else is having to do the housework or take over dinner, when maybe that’s been a role that’s been historically yours in the family. The changing dynamics, I mean, that’s real stuff.
And that is stuff that family members, especially like if it’s in a marriage, for example, where people tend to have their roles, one partner and the other, and having to switch that around, or maybe one partner having to take on another 20% of the household or they’re taking care of the kids. That’s tough. And that requires a real conversation, especially when the other person, “looks good” and looks healthy otherwise. And at the end of the day, it’s a family affair, isn’t it? I mean, what have you experienced in terms of this, dealing with a chronic illness being a family affair, what happens actually, when it’s not a family affair, when the communication breaks down, what happens?
Asking For Help Can Be Uncomfortable
Rachel Kaplan, LCSW: It’s very hard. So many examples are coming to mind as you’re talking about this of clients I’ve worked with, where they have had a negative experience with a family member when they’ve needed assistance in some way. And sometimes that’s because the person doesn’t understand and sometimes the person who has a chronic illness interpreting that as, oh, they’re seeing me as a burden or an inconvenience.
And so it’s a little bit of both, that come to mind that seems so simple as somebody with chronic illness, who has a child feeling really exhausted and not feeling well, needing some more child’s care from another family member, but that child’s care then takes that person away from helping a sibling of theirs with their child’s care. And then there’s some tense dynamics between you as the person with a chronic illness and your sibling, because you’re taking a resource away from them. And then what happens there is I don’t want to for that help again, because I saw the conflict that it was creating and I don’t have the energy to even go there, I don’t want to have that conversation because I don’t think that sibling’s going to really get it, I don’t have the energy to have a fight with this person or to explain what it’s like.
And I also, I think that word guilt is really important that you brought up. I feel guilty that I’m taking away this person who could provide childcare to my sibling, who also has a kid because I need help so frequently because I’m so exhausted and I can’t after work or where after the work I do during the day also need a couple hours to myself.
And so when it’s not a family affair, I think people shy away from communicating or describing or explaining what their experience is like, because they feel guilty, they fear this burden role that they think that they’re taking on, and they also, these are people who once were able to participate in certain things like taking care of their kid every evening and I don’t want to necessarily even take that away from the person who was providing.
And so I think when the family communication system is broken or the person who has chronic illness feels uncomfortable asking repeatedly for help, it becomes harder to assert your needs and advocate for yourself because you don’t want to be in this role of burdening or inconveniencing the person in your family.
Karen Conlon, LCSW: Yeah. And so all these aspects begins with the communication breaks down, there’s increased stress, there’s increased tension, potentially more arguments about things that may not really be at the crux of anything, sleep hygiene suffers, and then that also increases issues with health and other things, work, study, vacations, maybe a decreased desire to go on vacations. It’s not because you don’t enjoy your vacations. It’s because there is this increased stress for all parties involved, do I need my medication? Do I need an infusion, if you happen to be on some kind of therapy that requires infusion? Everything is, like you said, project management, and if it’s not communicated or if there’s not really good communication, it’s very easy to make assumptions about what other people are thinking or what you think other people are thinking about you. So that communication is incredibly important.
Let’s touch for a second on, we’ve been talking about family, family, but what about friends? What about friends? And what about dating? And I mean, I think, it differs also with whatever age, if you’re in your teens or in your 20s or 30s or 40s or 50s, that’s one thing and so forth, but it’s also a belief system, whatever your belief system is about privacy, does this make you weak? What’s the stigma, if any, attached to that chronic illness? And we haven’t touched on that. Let’s touch on that for a few minutes because dating and social life, I mean, that’s hugely impacted, right?
Friendship And Chronic Illness
Rachel Kaplan, LCSW: Absolutely. I think social life, depending, again, what age you are, but for younger people, younger adults who are maybe single or still haven’t really active social life with their friends before they were diagnosed with chronic illness, I see a lot that this is the first thing that’s sacrificed, which is really, really such a shame because an active social life and being able to participate in these other relationships outside of your immediate family system is so important. Again, the entity that we talked about and also the pleasure, enjoying your life and having outlets for stress in a way that’s fun and makes you happy.
And I think social life often gets sacrificed because it feels selfish, I don’t have the energy to even get through my day with the things I need to do for others, how can I then use some spoons to go out to dinner with a friend or on this date? And so I think that gets sacrificed a lot when you are in a family system where you do have obligations to others or you work a job and have to use your energy for work that day or whatever it may be, social life is seen as something that’s not necessary and feel somewhat selfish to participate in.
But the other piece that you touched on that I think is so important is that socializing itself suddenly becomes really complicated. Who do I want to disclose this to? How do I participate in this in a way that feels comfortable for me? Do I have to go out and use some of this toxic positivity and act everything’s fine and put on this happy face because maybe I don’t feel like talking to them about how hard my day was and how much energy it took for me to get dressed and get to this restaurant or social event or whatever it may be? Maybe during COVID times, sitting on a Zoom with friends, which still can feel exhausting if you’re not feeling well and I’ve had a full day.
Dating is really complicated when you have a chronic illness, do I want to disclose it to them? What if I don’t feel well on the date? What if I have to last minute cancel and the message gets sent to them that I’m not interested? So many complex dynamics with dating with someone you’re not comfortable with, and you aren’t sure when or how to disclose to them this very personal, intimate part of your life.
Karen Conlon, LCSW: Yeah. And one of the things, for example, with my IBD patients that comes up is, okay, so when do I say it? Is it date number one and just hit them with it? Or is it date number two? Or do we wait until we’re much more intimate and then risk them saying, well, you should have told me sooner so I could make a decision? And so these are the things that people don’t realize, that dating isn’t just dating, going to the airport, isn’t just going to the airport. It is, and again, this is for people with IBD, for example, like you might be looking at, oh, where’s my gate? Someone with inflammatory bowel disease is looking at like, where are the different bathrooms that I can go to? Where are the closest bathrooms? That’s what they’re checking out. And that’s what they’re constantly checking out before they can enjoy anything. So the topic of disclosure, privacy, who to trust, and when do I trust them?
Dating With A Chronic Illness
Rachel Kaplan, LCSW: Another thing I hear really frequently with clients who have IBD with dating, you have restrictions sometimes around things you can and can’t eat or drinking alcohol, which is super common on dates or in social life depending on age or the culture that you’re in, but that gets complicated. Even something as simple on the first date as saying that you can’t eat that, or can’t go to a certain restaurant or you want to be closer to home in case you need to suddenly run to the bathroom, that glass of wine, you may not be ready to disclose, but you have to think ahead, how am I going to explain this? What excuses do I have to give so that I can put on this happy face, not necessarily disclose before I’m ready that I have this diagnosis, but also I want to impress this person, I want them to like me, I want them to think I’m fun and go on another date with me? It’s so complicated.
Karen Conlon, LCSW: I want to feel normal on this date and I want them to see me as normal too.
Rachel Kaplan, LCSW: Right. Absolutely. I mean, that comes with this. I mean, I think with everything we’ve talked about today, thinking about social life and for some of these younger people, the anxiety that comes with all of these fears, all of these what-ifs, all of this planning you have to do about what may go wrong on the date or at the social event or whatever it may be that you’re trying to participate in, having to worry and prepare for every possibility, like we said, it’s so draining and so exhausting. And the anxiety that comes with it is just a daily, daily thing for a lot of people with chronic illness, how do I participate in life in a way that’s going to work because so many things could go wrong, things I never had to think twice about before I have this chronic illness?
Coping With A Chronic Illness
Karen Conlon, LCSW: Oh my gosh. So let’s do some summarizing for people about coping, right? Just some tidbits that even though this isn’t going to solve everyone’s problem, but if people can walk away with some tidbits or some good recommendations that they might start to be able to implement or even start thinking about. If you’re not ready to implement any of these, that’s okay. Maybe think about which one of these might work for you. I’m going to start with acceptance.
Acceptance, I think is the key to everything. And acceptance, in my experience, doesn’t happen in a linear fashion, it comes in stages and each of those stages have tiers and you might be accepting of one aspect, but then be struggling to accept another aspect of your illness. And so just knowing and normalizing for yourself, that accepting everything that comes with having your particular chronic illness won’t happen necessarily in a linear fashion, or if you’re giving yourself four months or three months or six months, you could be dealing with something five years after your diagnosis that you’re like, “Oh my gosh, I can’t believe I’m thinking about this now.” And that is because being able to accept different things comes with different experiences.
So different experiences as you live your life and you allow different experiences into your life may bring up some memories, some of those regrets, some of those fears. And so just know that acceptance does come for this reason because we are going to live our lives, you are going to live your life, you will go on. So that means you are going to allow new experiences into your life and there might be some new areas to accept. What are your thoughts, Rachel, about control and the focusing on controlling in terms of chronic illness? What are your thoughts on control?
Control (And The Lack Of It)
Rachel Kaplan, LCSW: Control is a very complicated thing to talk about when we’re thinking about chronic illness. When you have an illness, you’ve lost so much control over your life. And I think what happens then emotionally and with your day-to-day life is that you often are grasping for what control do I have, where can I control things? Because everything with my illness, I feel so helpless in and I feel like it’s so out of my hands. So I think there’s two sides to the control piece. I think some of it is with things you cannot control, relinquishing that, not trying so hard to find a way to control the aspects of your life that you can’t, because that process in itself is exhausting and that’s going to deplete your resources as well, your emotional and physical resources when you’re trying to control what your day or your life’s going to look like. And I know that that feels scary, but it also can feel really comforting to just say, you know what? Some of these things are just out of my control right now.
So focusing on what you can control, because even with any of these coping strategies that we talk about, it’s not going to change the circumstances of what’s going on in your life. We don’t know what the future holds for anyone, let alone someone who is dealing with chronic illness and trying to control that and plan and be organized and think ahead about that, it’s not going to change what happens, it’s not going to change the outcome. So what can you control? You can control how you take care of yourself physically with self-care, you can control how you take care of yourself emotionally, meaning how you respond to yourself when you’re having a hard time, how compassionate you are with yourself, how patient you are with yourself and empathetic, you can control the people you surround yourself with who are there for you, who are positive influences in your life, who are supportive to you and make you feel good.
Social Support As A Buffer For Stress
Karen Conlon, LCSW: And yeah, social support is definitely, it’s a buffer for stress, by the way. It absolutely is. I mean, there’ve been a lot of studies and research done around how social support is actually a buffer for stress. So surrounding yourself, like you said, with those positive and supportive people around you. And by positive, we don’t mean that they’re just telling you everything’s okay all the time. We’re talking about people who allow you to be whatever it is that you need to be in that moment and whoever you are in that moment, whether you’re in your chronic illness in that moment or are out of it, because I always say, your chronic illness does not identify you.
One thing I wanted to add here was, obviously, using the spoons theory as a way of explaining that depletion and energy. And another one that I think people don’t think about, but I think is super important is, in terms of learning to self-advocate, even with small things, particularly with your doctor, collaborating with your doctor is actually a form of self-advocacy. You can partner with your doctor now. It also depends on the doctor’s manner, because there are some doctors that feel like, well, look, this is what I’m here to do, and I’m here to help you and you’re my patient. And they have a way of being in that space, where it’s very clear what the roles are. But then there are other doctors who feel more comfortable being more collaborative with patients.
So first of all, know yourself, what is it that you want from your provider? Would you like somebody to say, “Look, I don’t want to make any decisions. You tell me what to do here and you give me my options and you set a course here for me, because I don’t want to deal with this.” And if that’s what you will you feel comfortable with, then that’s the type of provider that you should look for, because the relationship that you have with your doctor is incredibly important in terms of managing your condition or your illness. If however, you are the type of person that likes to do research and you want to have conversations with your doctor and be collaborative, then you want to try to find a provider that is like that, that will listen to you and say, “Look, this is what I think, but then also be open to what your thoughts are.” So learning to self-advocate by becoming a collaborator of your own health care.
Becoming A Better Self-Advocate
Rachel Kaplan, LCSW: Definitely. Yeah. I think people will sometimes get uncomfortable speaking up for themselves, the doctors, the authority, the chemistry between you and your doctor and your level of comfort and your ability to trust them is really important. And sometimes the style and the bedside manner of the doctor isn’t the right fit for you. And that’s okay. I think people feel bad about questioning or pushing back when the treatment team or the doctor doesn’t feel like the right fit. And there’s nothing wrong with that. It’s really important. Just like we talked about social support, the support from the medical team has to be with people that you trust and feel comfortable with, that you’re going to be able to say, this isn’t working for me or I am having a really hard time, that you don’t need to feel like you walk into that room and you need to put on that happy face and use that toxic positivity.
I think that happens in the doctor’s office more than we realize. So that fit is really, really important. And it’s okay if the first few people you try are not the right doctors for you, there’s nothing wrong with that. And I think that advocacy for yourself is key.
Karen Conlon, LCSW: Yeah. Yeah. And speaking of fit, since we are mental health practitioners, I think it’s very important that if you’re taking care of your physical health, very important to take care of your mental health, because your mental health does impact your physical health. We know this. And I say the same thing for finding the right therapist fit for you. If it doesn’t feel right, trust your instincts, there are very many good therapists out there that have the right bedside manner for you. And so finding the right fit, finding the right chemistry is incredibly important because that, just like with the relationship with your provider, with your doctor, the relationship with your therapist is also going to be very telling in terms of the outcome that you have with the work that you do with this therapist.
Well, thank you, Rachel, so much for being here today. If anyone wants to know more about how to work with Rachel Kaplan, you can visit our website and that would be www.cohesivetherapynyc.com. And then you can go to the under About Us tab and you can read more about Rachel and about the great work that she does. Rachel, thank you so much. It’s so awesome to have you here.
Rachel Kaplan, LCSW: Thank you. So great to talk with you. And I also thank you for bringing so much light and taking the time to talk about this really important topic that I think people don’t take enough time to really think about. Thank you for that.
Karen Conlon, LCSW: Yeah, it’s a really important topic to me. And thank you so much for having a focus on it. Folks, any chronic illness can cause a huge life shift for the person experiencing it, but it also affects people around them. Also, relationships change, and sometimes very dramatically and drastically, but if we can work together to better understand how the illness is affecting the person that’s dealing with it and how we can ensure that the relationships that they have are supportive and understanding, it is possible to continue to thrive. If any of this resonates with you and you would like to explore it further, feel free to reach out to us. And as always, want you to know that you can find out more about our podcast and head over to the show notes by going over to cohesivetherapynyc.com/podcasts to check out those show notes. You can get resources, there are links and how to get in touch. Thanks for listening. And I’ll see you next time when I ask again, so, how’s therapy?
About So, How’s Therapy?
In each podcast episode, Karen and her guests work to push through the traditional therapy format to demystify, debunk, and destigmatize therapy.
Whether you’ve been in therapy for years, or are thinking about reaching out, Karen is here to guide you through it all.
She tackles everything from Anxiety, Trauma and PTSD, to Childhood Emotional Neglect, to dealing with chronic illness, and everything in between, through the lens of her private practice in New York City, Cohesive Therapy NYC.
About the author(s)
Karen is the founder and Clinical Director of Cohesive Therapy NYC. She earned a Masters in Social Work from New York University and has extensive training in Hypnosis, Anxiety, Cognitive Behavioral Therapy, Brainspotting, and DGBI. She is a member of the Institute of Certified Anxiety Treatment Professionals, The Rome Foundation, the National Association of Social Workers, The Crohn's and Colitis Foundation, and the American Social of Clinical Hypnosis.