Transcript for Edge of the couch

Being Chronically Ill As A Therapist

Speaker 1:

This podcast is not training or supervision. This is an invitation to delve into these really big topics. When we are talking about clients, please know it is not you. It is a weaving together of stories that come up over and over again.

Speaker 2:

With Edge of the couch, we are here to create a space to delve into the topics that were either shied away from or dismissed because they were too big, too nuanced, too risky, or too uncomfortable to discuss in school or even supervision. We are two passionate therapists sharing our personal opinions about the therapeutic process.

Alison:

Hello, Edge of the couch community. I am Alison McCleary.

Jordan:

I'm Jordan Paquel.

Alison:

And we are Edge of the couch. Today, we are talking about being chronically ill as a therapist, so let's just dive right into it. Jordan, what comes up for you when we think about chronic illness and being a therapist?

Jordan:

Immediately, I think about the spectrum of chronic illness. There can be people who are sick and may not identify as having a chronic illness or people who do have a diagnosis, but are in remission for months and years and don't really have that as their lived experience from day- to- day.

Alison:

Yes.

Jordan:

Yes, we see it as a spectrum rather than a linear spectrum from one end to another. I see it almost like when you pick a color in any kind of program on the computer and it has a rainbow circle where you can be anywhere on that.

Alison:

The shades of purple or something?

Jordan:

Yes.  

Alison

It is complex whether you have a diagnosis or feel crappy all the time and you don't know why or you go to the doctor a lot or you haven't brought it up with your doctor at all. Further, who is "legitimately" chronically ill and who isn't becomes really complicated. The only experience I can speak to is my own, but just spending so long, being really sick and there being no answers and all my tests for a long time, coming back as normal, it messes with your mind because then when I'm so fatigued, I can't move off my couch in the evening; I almost gaslight myself. Am I even sick? All I did was see clients today and do homework. Why is that so hard for me? I quickly got rid of all of that the minute I got an auto-immune disease diagnosis. That switches things in your head so quickly to, oh, okay.

Jordan:

And now it's "legitimate."

Alison:

Totally! Even though I was sick for so long and I didn't know. During that whole time, it felt very illegitimate and you and I had conversations in the fall when I was the sickest I've ever been and saying, I think I'm chronically ill and having this whole clarity and dawning into an identity that I didn't even realize. Then thinking, but do I belong in that community because I don't have a diagnosis and I don't look sick when you look at me.

Jordan:

Very common with chronic illness.

Alison:

I would imagine so. Yes.

Jordan:

And I imagine that there are people in our Edge of the couch community who may not have that diagnosis or that identity, or be part of the chronic illness community, and yet have the lived experience of being really sick and having to schedule around energy levels and illness. That's my hope that there can be a way for therapists with chronic illness and chronic conditions to be seen in the whole spectrum.

Alison:

And then you layer on top of that, being a therapist - that ultimate caregiver role; it does get, I don't know if it's guilt-inducing. I need to show up, so how do I show up when I'm feeling like crap? It's really hard.

Jordan:

It goes with that idea about being a therapist and not being a human though.

Alison:

Totally.

Jordan:

Having pain, that is part of being a human. So how are we modeling that with clients, which is easier said than done when it's, I'm sick once in a while? I have a cold versus it being a chronic condition?. I think that that gets more emotionally challenging.

Alison:

Two days ago, I had to cancel my day of clients because the night before I'd had food poisoning and I was so sick all evening and into the night.

Jordan:

That's awful Alison, you didn't tell me that.

Alison:

It was really awful; being sick sucks, but it was so much easier to cancel clients because this is a very legitimate thing. I was visibly ill in a way that I'm not normally ill and how much harder it is to cancel clients when I have a headache or a migraine. You know, I'm really bad at canceling clients when I have a migraine. In fact, it's an issue that I have and continue to work on.

Jordan:

I've done this too, so I'll speak from my own experience. I have had sessions where I cannot see. My migraines can make it so that everything looks like a jumbly, sparkly mess and I can't see my client's face. And yet I have pretended to be present, to be listening when I am in horrific pain. I don't know. There's something about being in front of a client that sometimes the volume is turned down and then immediately when they go through the door, all of a sudden I am in so much pain. For some reason, when a client's there, I don't know if it's a distraction. That's so unfair to them and to me.

Alison:

Oh my gosh. I'm laughing because first of all, the absurdity of it, you and I both having done the thing of literally staying with a client when it feels like my head is cracking open and the minute they leave, I lay on the floor because I'm in so much pain.

Jordan:

Exactly.

Alison:

There's something so silly and absurd about it. I would never expect that of someone else.

Jordan:

Or your own therapist.

Alison:

Oh my God!

Jordan:

Go home. Really

Alison:

Do not do therapy when you are in pain, but it's so much harder when it's yourself. So what do you think is going on for you in those moments?

Jordan:

It's so much easier for me to cancel later sessions in the day where people aren't already on their way.

Alison:

Yes.

Jordan:

When I was in-person and people drove or transited to the office, spent their time to be here; if the client has already come in, it's really hard. At least in the past, it was really hard for me to cancel. Now that I'm online, it's so easy to say, let's reschedule because there isn't that time investment in coming in.

Alison:

For me, my schedule is so tight with clients, school, practicum and supervising the students that I might be in pain, but I'll get these sessions done and then I don't have to reschedule them for another time, which inconveniences me in a different way if I have to see these clients on a Saturday, which I don't like seeing clients on the weekends.

Jordan:

No.

Alison:

Because alternatively, I'm not going to see them for another month because that's the next time they're booked and it's in my mind, like mental math around weighing the pros and cons and which is worse; which is terrible because the worst thing is for me to be in pain.

Jordan:

Yes.

Alison:

But it's a harder issue to deal with if I have to cancel and reschedule them.

Jordan:

Yes. There has to be some, even if it's not conscious, it’s pervasive in our field, that serving clients means minimizing my needs and centering the client's needs. Which of course that is part of our work and we are human.

Alison:

Yeah.

Jordan:

I’ve come to have boundaries with my schedule because of childcare and just for my own self-care, and I’m not going to schedule a session on the weekend, even if I had a sick day. I don’t know, what do you think about that?

Alison:

This is why we did the podcast, right? Because you and I both talk a lot about not being a martyr for your clients. That's not what therapy is about. Our field has done this and it's so problematic for X, Y, Z reason. Here in this cognitive place, it's a genuine criticism of the field, but then living the reality of that for whatever reason is so much harder. It's really hard to say to a client, I know that you've waited three weeks for this session. I know that you're in the throes of a breakup and you really need a session, but I feel sick and so you're going to have to wait another three weeks. It's hard and the reality of it is much harder.

Jordan:

That's another thing. If you're in private practice, you can have fees high enough that you can take time off already built-in. I can't cancel a whole day of sessions because I have to reschedule them in order to make rent. But if it's already built into I make this much this year, so I will have X number of sick days. If you have a chronic illness, it can be completely unpredictable, but something to think about in setting fees and how many clients you take on. If you're taking on clients, the number that clients can't book a session a month, even once a month, then maybe there are too many clients on your caseload.

Alison:

Yes. You're preaching to the converted. I have a very busy practice right now, based on the lack of outlook. I have a small, and I'm not seeing a lot of clients per week, but yes, it all becomes really hard. The fees thing is so interesting because I had never even thought about putting sick days into my fee structure. That didn't even cross my mind. Whether that speaks to me not understanding business well or speaks to how few sick days I’ve taken as a clinician, let me tell you that they are not many. It is very hard for me to cancel clients. It takes a lot of me saying mentally, you can do it, Alison, it’s going to be fine. You can do this.

Jordan:

Yes.

Alison:

Even when sometimes I've been very sick.

Jordan:

See, when you're talking about the cold or flu post-pandemic, I think that might be something that's shifted where it might turn into a virtual session if you have the wherewithal to do it. But I can't imagine that we're going to live in a world where people are going to go into spaces with other people when they are actively sick in the same way. Capitalism will continue to exist so I'm sure that that will still be a thing but I imagine there has to be a tiny shift in the way that we think about things because that didn't really occur to me in the past when I've been sick. It's occurred to me when clients are saying, please don't come here if you're coughing or sneezing.

Alison:

Yeah.

Jordan:

I've had clients come in with a fever.

Alison:

Oh my God.

Jordan:

So I hope that having virtual counseling - an available alternative - people still have access to counseling. For therapists with chronic illness, maybe it is having some portion of your practice being virtual because, at least for me, it's so much easier to cancel sessions that are virtual versus sessions that are in-person.

Alison:

It's so interesting how money and finances are so closely connected to this chronic illness conversation because I think sometimes clients come to therapy because they're scared of being charged the cancellation fee. Another thing is being fluid in your cancellation fee, that if you say to people, if you cancel within 24 hours, you pay a hundred percent charge, which is my fee, but if someone tells me they're sick, I don't charge them.

Jordan:

I have a pretty firm boundary around it with the exception of illness.

Alison:

Yes.

Jordan:

If a client has a chronic illness, we have a conversation about an ongoing practice, depending on how their chronic illness comes up, what it’s like for them, because it can come up in so many different ways. How can we find a way of scheduling that works for them? That is sustainable?

Alison:

Yes and if you can flip that back and hit a mirror and bring it back onto ourselves, the biggest mistake I made as a new therapist; I was so desperate for business and I wanted to build my practice that I said yes to everything - working Saturdays and working evenings. I saw way too many clients in a week. Thankfully I wasn't chronically ill at that time, but I can't even imagine what would have happened if I had been, because it is so much harder to cut days off, to not have weekends or evenings available than it is to slowly add things. So if you are a person who has a chronic illness and you're becoming a therapist, the biggest piece of advice I can give you is to start small and build slowly. To really listen to your body and get to a schedule that works for you and is maintainable because once you commit to a schedule, it is so difficult to change it.

Jordan:

Definitely, and knowing how your chronic illness shows up or their flare-ups; I'm someone with migraines and when I have a flare-up, I call them migraine trains. I was getting a migraine every day or every other day. Knowing that, how do I shift my schedule looking ahead versus spoonies? The idea that you only have a set number of sessions that you can do in a day on an ongoing basis. Then there's, I call it a weather system, where I can sometimes tell the difference when I wake up in the morning, is this a day that I'm going to feel what I call 'migrainey?' I hate that moment.

Jordan:

I don't cancel sessions, even though I know I should.

Alison:

Me either.

Jordan:

It's more that I internally take it easy - just take everything slow, take more deep breaths. Even if I don't have a migraine, I will lay down between each session trying to be as calm as I can, because the more that I worry about getting a migraine, the more likely it is that I'll get a migraine.

Alison:

Tell us a little bit about how chronic illness or being chronically ill has shown up in your life and in your practice.

Jordan:

Sure. I guess I want to say off the top that I don't identify as having chronic illness though, literally in this exact conversation, I'm saying wait...

Alison:

You're describing being chronically ill, huh?

Jordan:

Yes, but I don't have that identity. I'm not in the community.

Alison:

You're not fair enough.

Jordan:

I don't have a diagnosis. Okay, well let me go here. I do have a diagnosis, but it's not of an auto-immune disorder or an auto-immune disease. I have, what's called an arterial venous malformation, a brain AVM, and I have multiple brain aneurysms. This means that I have had migraines, extreme, horrible migraines, not knowing that I had these things in my brain for years. I've had a handful of seizures in my life too, when it's at the extreme, completely depleted beyond my capacity. I've had a few seizures in my life, but when I got that diagnosis, it made sense as to these are why I have these migraine trains. Migraine shows up this way but my AVM is located in the area where I see my right visual field and that's how it always starts. It starts on the right and then it takes over my whole visual field. That's how it shows up for me and because I don't have that connection with a chronic illness identity, even though I do have a diagnosis, but it's not what is traditionally a chronic illness diagnosis. Maybe seizures are, but I have had very few of them in my life. Some of it is when I'm working with clients who have a chronic illness, I might disclose that I have migraines, but I don't say, we're similar because in my mind, we're not. I don't have fatigue in the way that a lot of people with chronic illness have fatigue. I have fatigue related to migraines, but it doesn't look like what I see a lot of people with chronic illness; what it looks like for them. So that's part of, I feel on the periphery, but I definitely have some experience that have to take that into account in my scheduling and just the way that I approach my cancellations and my exit plans for between sessions or even during sessions, even though I've never had to use that. I don't know. What about you, Alison? What has been your experience, your journey with chronic illness?

Alison:

Before I get into that, I do want to name in this moment, I'm having a really interesting sense; a reaction of wondering what it's going to be like for our clients to hear this because if our clients listen, I don't know, maybe they don't, but I don't talk about how sick I've been with my clients.

Jordan:

Literally, no one knows about my AVM or brain aneurysms. Literally. I had brain surgery in October.

Alison:

Yes, this is crazy. Yes.

Jordan:

It wasn't open brain surgery, but it was brain surgery and I took two weeks off. I had clients saying what are you doing for the weekend? And I'm saying, nothing much. See you next session, even though I could have died.

Alison:

(Chuckles) I'm sorry I laughed. I shouldn't laugh at that.

Jordan:

Yes, but just that, I mean, it's

Alison:

Serious. It's very serious.

Jordan:

It's absurd, is what it is, keeping that from clients and I think I would still make the same choice because it's such a scary thing, I think it would make it about me. This is a space here in this podcast and it's for other therapists. So to me, this is a different space in my disclosure than it would be in a session with someone.

Alison:

But then I wonder, let's say a client hears this and they bring it up. It could be really juicy, interesting stuff.

Jordan:

Yes, if you're a client and you're listening, please bring it up. If you are having a response to it, I’m comfortable responding to things that people have told me. I have clients say all the time, I follow you on Instagram and I know you're a mom.

Alison:

Yes.

Jordan:

I go, oh, I didn't disclose that to them but the fact that they know that I'm a human and it doesn't feel super vulnerable for me to respond. I think that's also part of it, Alison. Last year when I had my surgery, I was in a completely different place around the diagnosis.

Alison:

Yes, it was fresh. It was so fresh and scary.

Jordan:

I have come to a place where I feel grounded in it and have gotten a lot of therapy around it. Obviously, it's still a really scary thing but if a client asks me, I'm not going to crumble or melt into an existential crisis.

Alison:

Dread.

Jordan:

Yes. I feel like I can share this now and not worry that much about clients listening.

Alison:

That's so great. I'm glad.

Jordan:

What about you?

Alison:

Yes. I'm in a doctorate program as I've talked about before and my personal experience with the doctorate program is that it's very wearing. I'm doing it simultaneously - running my practice and doing the program.

Jordan:

And the podcast.

Alison:

And the podcast and I have a boyfriend, so that's work too, but there's a lot on my plate right now and something I'm working on in my own therapy is how to be okay with putting down some balls I'm juggling. It's fine to drop balls, but I don't, which is why I've ended up in situations where I'm sometimes so maxed that I'm in migraine land for days. I brought up the doctorate because it just puts this stress on your life in such a way that it’s constant.  You never get a break from it. It's five years full time of school and pressure. There's always something to do and read and I think that took my body to this place where it very much felt like a gun was already loaded to some degree and then beginning the doctorate pulled the trigger for me. I get chronic migraines as well.

Jordan:

Chronic migraines, meaning about 15 a month.

Alison:

Yes. This fall was the sickest I've ever been. They hadn't been that bad before. I would get one or two per month. I would take my meds and they would stop and that was it. I'd have some swatches like four, five and six days migraines once a year and then from September to January of last year into this year I was very sick; feeling this whole sense of what is happening; going to the doctor and getting no answers. My meds, became med resistant, so my meds weren't doing anything and we were having to up the meds and there was talk of injectable Toradol and it just got very intense. Nothing was working, which takes you to such a hopeless place to talk about, moodwise. It is so hard to think straight and have hope when you're in so much pain.

Jordan:

And you didn't have a diagnosis at that point.

Alison:

Well, I still don't have a diagnosis that explains the migraines.

Jordan:

Okay.

Alison:

So the migraines are still a mystery. I just think we found the combination of vitamins and meds that keeps them at bay, which is so nice.

Jordan:

Yes.

Alison:

It's been life-altering. It was so interesting during that time, I think I canceled about two sessions in that timeframe.

Jordan:

You were so sick.

Alison:

I was so sick. I think my clients would be shocked to hear this. In January, beginning, this new semester, I had to reach out to my teachers to say, I don't know what the semester is going to look like. I've been very ill. All of them who I had been with this semester before were saying, what? That's on me to some degree too. I didn't ever bring it up. I didn't let people know I was sick.I told three friends that I wasn’t doing well and my partner, obviously who picked up the slack and took such good care of me in every way.  What is that about? I'm trying to do work around, how could I not have held it back a little bit? In hindsight, what was I doing? And so unnecessary. My clients would have been fine, but there's something in me and this is a thing that I deal with in other ways too, where I feel really badly if I can't show up for my clients; even though I know that that's problematic and probably my clients would rather not know that they're seeing me when I'm really sick. And even when my clients have chronic illness and are very ill and talking to me about their illness, I'm not talking to them about it. I'll say, yes, I get migraines, they are so tough. That reaction, that moment in no way actually matches what my reality of having migraines is like, which is that they are often debilitating.

Jordan:

Yes.

Alison:

Should I stop being a therapist? Should I quit school? They take me to that place.

Jordan:

Then there are these overarching power structures, capitalism being one of them.

Alison:

One hundred percent.

Jordan:

This idea that you need to produce and we live in an ableist society;

Alison:

Yes we do.

Jordan:

For you to have disabling migraines and other symptoms is not supposed to factor into your productivity

Alison:

An invisible illness. I can't show anyone the level of pain that I'm in. When I have my migraines, I'm not throwing up. I'm not bleeding. You won't see it. Well, my heart rate does increase significantly, but especially because I have really conditioned to my body to push through the pain so much.

Jordan:

You actively hide it and so do I but in terms of how sick you are, you didn't tell very many of your friends, even the people that you told, it was, Oh, I (crosstalk: Alison- I did not) sick and not sharing the experience of what it's been like and so there's some stuff there that it's with clients, but it's also being open about your experience with all the people in your life.

Alison:

One hundred percent. This is embarrassing. Not embarrassing, but it feels vulnerable, which is that I love when people tell me how much I'm doing and are saying, I could never, and I'm like (laughs), yes, that's there. It's stirred into all of it and I get this resentment and I talked to some classmates about this and some people around it where, when people are saying, I'm really busy,in my head, I'm saying you think you're busy. No one is as busy as I am, which is the work I'm doing in therapy. This is why when we go underneath it, there's stuff there, there's personal stuff. There are community and cultural stuff. You have to prove you're sick. If you're not sick, you better be producing something and then there's also guilt around not serving my clients. So if I can't see a client on Monday and I can't see them for another three weeks, I sit there and I stew on that and I worry about it when they're probably fine.

Jordan:

They're probably fine but that really does come from a good place. You have real care and concern for your clients, which is a good thing. It's when it comes at the expense of your own capacity and when it gets into an infantilizing situation, that I'm the person who's going to save them; I mean, not that that's what you're, maybe there was a part, but there can be that for a lot of us, that underlying idea that if I don't meet with this client, then they aren't going to be able to cope. Therapy is super important, so I also don’t want to minimize that, but from a therapist’s perspective, I’m the person who helps them through.

Alison:

We can't say stuff like that!

Jordan:

Yes, they do.

Alison:

I really needed this. I've been waiting for this all week. It’s so lovely, and I am so happy that the therapeutic space feels comforting, and clients look forward to it, which contributes to my guilt feeling.

Jordan:

It's this fluid, multilayered piece of being human and built-in power differential that one person is there to be supported and one person is there to do the supporting, even if there is some element of mutuality. Here in the podcast, the value statement of our podcasts is that therapists are whole people.

Alison:

It gives me goosebumps almost. It's profound. It feels permission-giving, but then also kind of scary. And now I look back and I wonder what would've happened if I had said to my clients, I've been very ill, I'm not going to be able to see clients for the month. I think 99 percent of them would have been completely fine with it and said really kind loving thing.

Jordan:

And maybe even a point of connection in that.

Alison:

But then there's still a part of me that worries some of them would go, well, then I can't be your client anymore. I need help.

Jordan:

That might be how it is.

Alison:

Yes?

Jordan:

Let's say that you and I want to move into sharing more when we're completely in debilitating pain that we actually tell clients and end the session. Whether it's because you need to end the session or, I'm thinking about people who have back pain. I know many therapists have chronic back pain and have to constantly shift how they sit or have some kind of contraption in their chair and disclosing to clients that, this isn’t me being bored antsy or something like that. This is me trying to manage my pain, but also that’s the disclosure and maybe that feels really intense and you don’t want them to take care of you. What do you think about that?

Alison:

It's a fine balance because we, it really has been hammered into us in school and in other settings that the session should not be about you, but how do you disclose something like AVM and not have a little bit of it be about and you and I. Again, we're whole people and we work from the idea of the relational keys to energy flow in both directions and how do we find that balance? We've talked about it enough, but not so much that it became about me. It's tricky. I have for years considered putting it in my consent that I have migraines and I just haven't. But I think if it were to happen in real-time saying, I really wish that I could continue this session. I want to be able to hear you, but because I'm feeling so sick, I'm not able to show up for you properly. I think it best that we reschedule. That's in a fairytale land like Narnia; this is an example because I've never done it but that's how I think I would do it.

Jordan:

Well, having that exit plan of what would I say, because often we don't the wherewithal, so being able to practice or have that phrase in your back pocket would help in those moments. I can't disclose to clients that I have an AVM or brain aneurysms, because that is terrifying. That is so much information. When we talk about the spectrum of chronic illness, my lived experience on a day-to-day basis is very limited to when I'm talking about pain and fatigue; there can be weeks or months well more like weeks that I don't have migraines and my diagnosis is the kind of scary diagnosis that no matter what would shift the focus.

Alison:

Yes, and it's like a Grey's anatomy type. It's a very serious, seemingly very scary thing, so I understand. It makes me think about clinicians who get cancer and it reminds me of this story in our ethics class and my doctorate, we were talking and I think a classmate, I'm sorry, whoever it is; I can't remember, shared a story about the therapist having cancer and not telling their clients and then dying of cancer and their clients having to find out that they died from the receptionist, like sending them an email or whatever the case was or reading about it in the paper. What is that about? If I'm imagining, it's about not wanting to scare the client and make it about you, but God, there has to be some type of, I'm being a giant hypocrite, but there should be a line of, I should be able to talk about this in order for us to feel closer and for you to understand me and me understand you and yet it still feels very scary to do that.

Jordan:

Like all the other ways we show up, we can’t know how a client will take anything that we say. Something that helps me is being able to think about if I were the client and my therapist was going through this thing, how would I feel? How would I feel if my therapist is in pain or completely at their capacity, fatigued? I want to know that because I see my therapist as a whole person and I don't like that feeling. It feels almost like being infantilized. I'm fine. Take care of yourself.

Alison:

It is infantalizing.

Jordan:

Something about that as the client, for me, feels a little bit icky. Obviously, not all clients will respond that way, but putting ourselves in the client’s role and imagining what that scenario would be like from the other end can give us a little bit of information about our clients.

Alison:

That's a really wonderful exercise, if you're a new therapist or a student therapist, remember that, how would that feel like a client to hear, if I found out my therapist had been in pain every time we met? I would be mad maybe.

Jordan:

Yes. Why did you come here? Don't do that. We need to remember that therapists are whole people, which means that sometimes we cannot show up for our clients how we want to show up. Really look at your capacity, examine it and self-reflect

Alison:

Totally! Even though I was sick for so long and I didn't know. During that whole time, it felt very illegitimate. You and I had conversations in the fall when I was the sickest I've ever been and saying, I think I'm chronically ill and having this whole clarity dawning into an identity that I didn't even realize. Thinking, but do I belong in that community because I don’t have a diagnosis and don’t look sick when you look at me.

Jordan:

Yes, and to say otherwise, and the shame or the secrecy around it is ableism.

Alison:

I agree. It's important that we talk about illness in our community and not keep it shrouded amongst peers. We need to name it and talk about it.

Jordan:

Do you want to send us out, Alison?

Alison:

Thanks for listening and thanks for hearing our stories because this was a vulnerable one.

Jordan:

I can feel pinkness in my cheeks.

Alison

This has been Alison McCleary 

Jordan:

and I'm Jordan Paquel and this was Edge of the couch.

Speaker 2:

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