ERP 154: How To Get Relational Support When Dealing With Illness and Chronic Pain, with Dr. Jackie Black
Welcome to The Empowered Relationship Podcast, helping you turn relationship challenges into opportunities and setting you up for relationship success. Your host, Dr. Jessica Higgins, is a licensed psychologist and relationship coach who shares valuable tips, tools and resources for you to dramatically improve your relationship.
This podcast is 100% ad-free. To support this show, please subscribe and write a review today. Here is your host.
* * *
Dr. Jessica Higgins: Hi, thank you for joining today’s podcast episode. Today’s episode is 154, “How to get relational support when dealing with illness and chronic pain, with Dr. Jackie Black.”
Before we get started in today’s interview, I wanna let you know that I still would love to hear from you if you haven’t yet responded to ways that I might be able to support your further in developing your relationship skills… And also if you would like to share what your intention is when you tune in to the Empowered Relationship Podcast. I would love to hear from you; again, it helps inspire me, it helps motivate me, and it helps me further support you along your development.
To contact me, you can e-mail me directly, [email protected]. You can also visit my website, DrJessicaHiggins.com. There you’ll find articles, you’ll find ways to grow in the way of a program, as well as how to connect with me for coaching. And again, that’s DrJessicaHiggins.com.
As your guide, teacher and facilitator, I wanna set the tone for the Empowered Relationship Podcast intention, which is to help you feel supported, to help you feel informed and more prepared as you navigate intimacy, with all the ups and downs and just the day in and day out, how to cultivate, co-create a relationship of your dreams, with authenticity, with passion and with aliveness. Let’s get started.
Dr. Jessica Higgins: Dr. Jackie Black is a marriage expert, educator and Board Certified Coach, serving couples facing life-threatening, chronic illness and chronic pain. Dr. Jackie is the creator of the 7-week online program Couples Daring to Live Well With Illness program, and the 3-day private destination retreat Couples Daring to Live Well With Illness Retreat.
She also serves private clients and is an author, speaker, frequent guest expert on summits, podcasts and radio throughout the world. Dr. Jackie Black, thanks for joining us today.
Dr. Jackie Black: It’s my pleasure, Dr. Jessica. Thank you so much for inviting
Dr. Jessica Higgins: Yes. So today’s topic, couples living with chronic illness, chronic pain – can you help us get a little bit more understanding of what we’re talking about around this topic?
Dr. Jackie Black: Yes. I think that people would really be shocked to know how many people live with life-threatening and chronic illness and chronic pain. The numbers are astronomical, and it’s kind of invisible… Unless people are really sick, they don’t talk about it, and sometimes people don’t know. It’s especially true with chronic illness and chronic pain… And it affects everybody – visionaries, people in business, people in the military, people in law enforcement, teachers, salespeople… Everybody knows somebody, whether you know you know them or not. When somebody is diagnosed and living with life-threatening or chronic illness or chronic pain, the relationship takes a huge hit.
We’re accustomed to knowing that the person who is sick needs support, and there’s lots and lots of wonderful support for people who have illness and pain. There is some support, more and more and better and better for people living with unloving people living with life-threatening and chronic illness and chronic pain… But nobody focuses on the relationship, and it’s actually the relationship — I’m the advocate for the relationship, because the marriage or the committed relationship really takes a huge hit. What that means and how that translates is people start moving further and further apart. They can feel isolated from each other… A million different things start happening, but there’s a breakdown in their closeness, in their connection and in their intimacy.
Dr. Jessica Higgins: Some of my listeners, I’m imagining, have had some exposure or experience with a chronic illness, a chronic pain; other people know that it exists, but maybe haven’t encountered it… Can you help us — what are people facing when they maybe get a diagnosis or learn that their partner is facing something? I have a couple of clients of mine, one is going through cancer treatment, and I’m working with the husband, and then I have another couple where the woman — it sounds very vague, but she is having to do intensive treatment, and it’s been going on for years and years, and the toll that it’s taken on their relationship… There’s other dynamics that I think have complicated it, for sure, but help us — if you can speak to both of those people, I guess, I imagine there’s things you would say there.
Dr. Jackie Black: Sure. Okay, so let me say first that people go into shock, and numbness and disbelief, no matter what the diagnosis is. We just never expect a diagnosis. It’s true of people who even don’t feel good for a long time, and they’ve got something going on and doctors can’t figure it out, and then when they’re finally diagnosed, sometimes they are relieved for a minute, but then they really go into shock, numbness and disbelief.
So we wanna understand that no one is ever really prepared… And people kick into hyperdrive, and they focus on what to do next. And while they’re busy doing, they’re reacting to the same crisis in very different ways; they have different experiences of the same circumstance, they have different needs and priorities, and sometimes their needs and priorities are competing with each other. And while all this is going on, people are afraid, they’ve got so much going on, they’re overwhelmed, they’re in an emotionally-overwhelmed cycle (we call it the rollercoaster of emotions) and they’re not talking to each other, they’re not sharing they’re overwhelmed.
You know, sometimes when you’re so overwhelmed, you can’t even make sense out of it… So people are not talking to each other, even couples who have been married a long time, even couples who have been through the grinder together. When illness is upon them, it becomes a very different thing. The reason that it doesn’t matter how smart they are or how educated or how successful is because the EQ or emotional intelligence is being tasked, not their IQ. So unfortunately, most people are somewhere on the EQ learning curve these days, but generally on the lower end or the middle end. So they’ve got all of these emotions churning and getting bigger and bigger, and they don’t have effective tools to manage them, and they’re not talking to each other, and their coping mechanisms and defense process that usually works for them has stopped working.
Dr. Jessica Higgins: Right. Man, this just sounds so overwhelming even as you’re talking about it, and I just imagine for the people that have had the identity in their life that they’re competent, they are successful, that pretty much whatever they set their mind to, they accomplish… So when they’re confronted with this diagnosis, whether or not it’s themselves or their significant other, it’s extremely humbling; it brings them to their knees, and it’s probably extremely disorienting at the same time.
Dr. Jackie Black: Yes, sometimes… And sometimes people decide that they’re okay, and this particularly happens with people who are diagnosed, not partners… They’ll decide that they’re Superman or Superwoman, and “I’m okay, I don’t need any help. I’m doing fine” and they try to deal with the enormity of what they’re experiencing, and still keep up with everything in life exactly the same, and they don’t make the adjustment. That’s one of the hardest pieces, is to really take a step back and evaluate what is still achievable, what is still realistic and makes sense in the presence of all this other stuff that is suddenly on your plate.
Dr. Jessica Higgins: Yeah, and as you’re talking, I’m thinking — I’m not in the medical field, but I get that there are so focused on the physicality, and I know that they offer some recommendations around self-care, but as you were mentioning, the EQ, the emotional intelligence and how to navigate this… What are you finding that people are exposed to, or what supports are out there?
Dr. Jackie Black: Well, there isn’t a lot of support for the relationship, for the couple, and generally, the care provider — I hate the word “caretaker”, I try to never use it, particularly when I’m talking to couples… Because first of all, caretaker/care provider, that is not sexy. Can you imagine what happens to your relationship dynamic if suddenly I’m taking care of you and you’re being taken care of by me? So we have to be so careful about the words that we use, that start to accurately represent what the role relationships are and how they’re shifting and changing.
Dr. Jessica Higgins: It sounds like you’re doing incredible work to help people feel support in their relationship when encountering this terrain… What can you offer in the way of — it sounds like communication is huge, but also possibly recognizing that there’s gonna be an initial response, and that that’s okay, but also that partners are perhaps gonna be at different places in their process, and that that’s okay… But yeah, can you help us with what are some of the things that you help people just in the beginning stages try to open up the dialogue for this? Because I can just say for myself, I know that I go into more of the mode of “I’ve got it” and I wanna rally, and then if my husband is going through a difficult time, I know the tendency to wanna accommodate and try to help and try to support, and then at some point it’s not sustainable, so I’ll get to a place to be able to say “Okay, I also have an experience here. Can we make room for that?” and it’s not an easy thing, because if I imagine — I don’t even wanna imagine my husband, but just imagining people that are facing this and their partner has a life-threatening illness, that… What trumps that? You probably have all these feelings around like that they’re going through so much, and I don’t wanna burden them. So I guess I’m interested in where you start with couples.
Dr. Jackie Black: Yeah, that is one of the two powerful myths that many couples believe are true, and these myths get activated and they’re actively operating in their relationships. The first myth is that the partners of people who are living with chronic illness or pain don’t believe that they have a right to have any upsets or be going through any tough times at all. That’s the first myth.
The second myth is that there’s this unspoken setup between people that all the focus and attention belongs on the ill partner, or the partner in pain, and the other partner doesn’t count.
One of the first things I do is a little myth busting… And the best way to do that is to help people understand that they have legitimate needs and wants, likes and dislikes and preferences, and to really start to unwrap that with people, because values drive behavior, not these myths. People tap into their values and they begin to really understand — I refer to this as self-knowledge. The better we know ourselves and what we need and what we want, the better choices we can make for ourselves.
Think about sitting in front of your husband, face to face, knee to knee – because we [unintelligible 00:13:49.28] talk about a knee to knee dialog… And the space that starts along your side and extends to his side, and around the front, down the other side, back to you and around your front – that space between you we call relational space. Relational space is really sacred space. At certain times and certain kinds of conversations, couples need to step into relational space and both show up. Everybody is equal in relational space. Relational space holds everybody’s needs, and values, and wants, and it’s okay to say no, it’s okay to ask for what you want…
So I really help people create that relational space, and then teach them how to use that to step into and show up, and be who they are… Because that’s the key – everybody needs to become more and more of who they already are in this situation, not take parts of themselves away. That feels awful, it creates alienation, and disappointment; it is very sad that at a time when you really wanna be close and feel the closeness and the support of the person that’s the most important to you in your life suddenly fade away.
I used to say to my late husband Mark, “You’re not in your face. Come back and be in your face!” I could tell if there were things weighing on him, or he felt afraid… And I wasn’t saying “Don’t be afraid, be okay”, I was saying “Come back. Let’s be here together and share whatever it is that’s going on with you”, even if he couldn’t bring words to it.
Dr. Jessica Higgins: And was he able to step or lean towards you in that invitation? Because I imagine that requires some willingness to be with his own discomfort to be with you, in authenticity.
Dr. Jackie Black: Right. When Mark was first diagnosed with cancer, I said to him “I can do this if we do it together. I don’t have martyr mentality (I already knew that). I’m just not gonna be a good martyr and I’m not gonna be able to make this all about you and not have needs.” But we were always a team, and I said “If we continue to be a team, I can do this.” And he looked at me and he said “I can do that.”
There’s one story about that that’s so poignant… He came home one day and he was really grumpy. He came and he sort of poked his head in my office and almost said “Hello.” I said “Hi, honey”, and he went back into his office and I thought “Huh.” So I got up and I walked in and I said “Hey!” and I gave him a little kiss and I said “How are you?” and he said “Fine.”
I gave him another kiss on top of his head and I said “I’m looking forward to seeing you later. I have some stuff I’m gonna do in my office right now.” I walked out of his office, and then later in the evening I said “I’m gonna order some Thai food. Can I get some food for you?” “No.” I said, “Okay”, and I ordered his favorite Thai food anyway.
Several hours later he came and he said “You’ve been so amazing today. You’ve been so sweet and so caring.” He said, “I just had such a bad day and I couldn’t reach back. I’m really sorry.” I said, “You have nothing to apologize for. Do you wanna talk about what happened?”
He was on a clinical trial, and two of the people in the clinical trial were not in the chemo suite that day getting their chemo. They had died. And he just couldn’t put words to it, he couldn’t talk about it… Until he could. But my caring for him and the space that I held for us wasn’t conditional on him being there, wasn’t conditional on him being okay. So those are the skills that I help couples learn, and hold a space for them to be able to do with and for themselves and each other.
Dr. Jessica Higgins: Yes, and I love the example that you’re sharing so openly. Thank you for giving a personal share… And I also — if I may just project, that took a certain amount of development for you to manage and really be in a place of your own presencing, and not to get personally, or have a reaction, or project what that might mean for him… This is where couples get so stuck – in their own reactivity of what all of that means to them. I just love how diligent and steadfast and committed — that’s what your example depicts.
Dr. Jackie Black: Thank you. And it’s true, couples without dealing with these issues get really stuck in those places. “I don’t wanna be treated this way…”, which I would have done years earlier. I would say “I don’t like being treated this way.” When you understand where you are in the relationship, and who you are, and why you’re there… I was there and was able to be there because I chose to be there, it was where I wanted to be. So my only decision was “How do I wanna show up? What’s aligned with my values of being the kind of partner and wife I am?”
Dr. Jessica Higgins: Was there any part of you two that liked maybe discussions and intention together, in your shared relational space, that you trusted that he would engage when he was ready, and trusting his process too?
Dr. Jackie Black: Yes, and that’s really key, which is why I work with both couples, and not just one person… Because there has to be a bilateral agreement. You have to agree, and I have to know you agree, and you have to know I know. And I have to agree, and you have to know I know, and I have to know you know I know. [laughter] All those parts have to be there. That really is a bilateral agreement. I can do that, I can feel safe. I don’t feel threatened, I don’t feel rejected or in any kind of jeopardy when those agreements are bilateral, and I know that you want to step in, and I know you will as soon as you can… Or sometimes someone can’t, and then they come and they say “You know, I can’t… I can’t step in right now. I need to be alone,” or “I need to be really shut down… I just can’t. I love you, and I just need to be in my own space right now.” We have to develop the ability to do that.
Dr. Jessica Higgins: Right, the self-discernment, and I’m sure the intentionality that you’re talking about, having had those agreements.
Dr. Jackie Black: Right. And I’m not saying it’s easy. I can say it easily and tell a lovely story… It’s hard. There’s always a combination of feelings. Part of it is about me, and part of it is about you. So I feel badly that we are no connected, and I feel badly that you can’t connect right now. There’s always those two parts that are happening.
Dr. Jessica Higgins: Can I ask a question…?
Dr. Jackie Black: Of course.
Dr. Jessica Higgins: Did you and your husband have a certain development in this communication skills before he got diagnosed, or did the diagnosis– I mean, I’m just imagining for some people, they don’t have these skills before diagnosis, and the diagnosis adds a whole other layer… But then almost holds their feet to the fire in some way around “You can’t avoid this. Or maybe you could try, but it’s just gonna make it that much worse.” So I’m curious what’s your personal experience and then what do you see in your line of work around this topic?
Dr. Jackie Black: Well, I had been in private practice and been working with people in the cancer community from the late ’70s, and this was my work, working with couples who were grieving the death of a partner or a family member, and in that process I started working with people with life-threatening and chronic illness; I didn’t start out — I really was working in the world of grief and loss, and bereavement. But I met people earlier in the process and then became involved in the world of life-threatening and chronic illness… First with cancer, and then in the AIDS and HIV community. So I’d been doing this work for many years by the time Mark was diagnosed.
When he was diagnosed, the first thing I said to myself was “Okay, I’ve got this. I can help us. I can support him, and I’ve got some stuff know, and ways that I’ve been supporting people, and… Okay.” Well… You know, I look back, and it’s like “Did I really think that?” [unintelligible 00:23:26.18] because suddenly I was an insider, and it was very different to have this be happening to me. And now as I sit here and I say this to you, it’s like a “Duh…!” but you don’t know what you don’t know, until you know it… So the answer is yes and no. I had a lot of experience and a lot of skills, and they all left me.
At the moment that Mark was diagnosed and we began facing all of this, we had to learn together because it didn’t matter what I knew… Our relationship was being affected and was changing, and he was being affected and he was changing, and I was changing… But even if I wasn’t, he was, and we were. Those are always the three pieces we look at – what’s mine, what’s yours, what’s ours? …so that what we create is win/win/win – I win, you win, we win.
Dr. Jessica Higgins: Yes, yes.
Dr. Jackie Black: So there were a lot of shifts and changes that we had — skills that we needed to learn, things that I “knew to do” that he didn’t want any part of… So we created based on who he was, and what he needed. And I think that that’s the gift that I can bring to couples – to really look at each couple and not say “Here’s my cookie-cutter solution” or “I’ve got this formula.” It’s like, “Who are you, and how are you being impacted? What’s working for you? What’s not working for you? How can I help you co-create the thing that’s missing, or the thing that you want now, given the circumstances?”
Dr. Jessica Higgins: I love it, I love it. I can feel the trajectory of our conversation, and also there’s a couple things you mentioned that I don’t wanna lose track of… You said there’s some myths. Is there any way that you can describe that a little bit more? I’m sure listeners really would love to know what to look out for.
Dr. Jackie Black: The myths or the traps?
Dr. Jessica Higgins: Either.
Dr. Jackie Black: Well, the first myth is that partners of people who are ill or living with chronic illness or pain don’t believe they have a right to have any upsets, or be going through any tough times at all. That was my comment to Mark when I said “I do not have martyr mentality. This can’t be all about you, because I’m not gonna be able to do it.” Even if I thought it was a good idea, I just wouldn’t get it done. We all have to know where our — he used to have a name for how we connected and communicated, and that was that we were co-CEO’s. I can really function in that space. So that’s the first myth – the partners don’t have any rights.
The second myth is that there’s this unspoken setup that both partners buy into, that all the focus and attention belongs on the ill partner, or the partner in pain, and that the other partner doesn’t count, and that just can’t be. You can’t be in a relationship with someone and not count, not matter. If it’s bad enough, everybody calls to say “How’s Mark?” and it’s okay, but we can’t do that between us. It’s one thing that that’s normally what happens from the outside in, but when we’re in, we both have to matter to each other.
Dr. Jessica Higgins: Yeah, and I don’t know that — I mean, I’m sure you can vouch for this, but at least in my experience it’s not even that helpful for the person that’s identified as having the diagnosis, that they don’t wanna be overly identified; it’s an experience they’re going through, but that’s not all of who they are, and to be couched or to be all framed in that way isn’t [unintelligible 00:27:23.02] for them either.
Dr. Jackie Black: Oh, it’s awful for them… But you know, well-meaning people… We don’t have good skills to extend empathy. We don’t have good skills to know what to say or what not to say, or how to deal with our own discomfort in these kinds of situations. I always said when I was working with people who were grieving that I was gonna write a book “197 stupid things people say to grievers.” [laughter]
Dr. Jessica Higgins: Brilliant, yes.
Dr. Jackie Black: So the traps are really interesting. It’s a model that I created, and I call them “The Three Unloving Traps.” It’s a model that specifically identifies three of the most common ways that couples start relating to each other in new and not so good ways. I want people to know what’s likely to happen, or that if it’s already happening, there’s a name, there’s a pattern, it’s predictable, it’s normal, and there’s something to do. We can positively affect and influence and change the pattern that’s going on.
Dr. Jessica Higgins: Are you open to sharing them?
Dr. Jackie Black: Sure, I would love to.
Dr. Jessica Higgins: I mean, I don’t know how deep — I understand you’ve already given us so much wisdom, so I don’t know if it’s too much for what we are doing today, but if you could maybe…
Dr. Jackie Black: I’ll just do a very brief overview, how about that?
Dr. Jessica Higgins: Perfect.
Dr. Jackie Black: Okay. So the first one is the superhero trap. That’s the partner who is living with life-threatening or chronic illness or pain, and they act as if they’re Superman or Wonderwoman and they insist they’re fine, and that they don’t need any special treatment or any attention… Their approach is “business as usual”, but the superhero’s partner wants to be supportive, and in the spirit of being a supportive partner doesn’t push back or make waves.
The downside of this trap is that it destroys the closeness or the connection that the couples enjoyed, and it causes the partners to feel alienated from each other, and isolated and alone in their marriage.
The second trap is the Chicken Little trap. Remember the 19th century fable Chicken Little, when the acorn falls on his head and he mistakenly believes that the sky is falling and disaster is imminent? Well, the Chicken Little trap is the trap where the partner loving the partner living with life-threatening or chronic illness or chronic pain is scared and worried and completely overwhelmed, and imagines only the worst possible outcome.
The problem with this dynamic is that the partner who is ill doesn’t get any support. They’re literally left in the marriage or in the relationship alone, because the other partner is catastrophizing all the time. The partner who is catastrophizing is just inconsolable, and is unable to receive support from the partner, from friends, from the medical community… So again, you wind up with partners isolated, disappointed, alone and alienated from each other.
And the third trap is the My Hero trap. That’s when the partner who’s living with illness becomes more and more overwhelmed with each passing day, and they make their partner their hero, and they depend on them for emotional, moral and physical support… And the hero, wanting to be the good partner, takes on this impossible role to the exclusion of paying any attention to the important things going on in their own life. And again, it winds up destroying the closeness and the connection, and the hero winds up feeling very resentful of the partner who is ill.
I don’t think I’ve ever given those so quickly, but that’s sort of a bird’s eye view of what the three — and there are other traps, but those are the most common traps, believe it or not. I’ve been working with people so long, and you know, we just don’t have unique experiences… We think we do, but there are so many universal themes, and that’s the good news – a lot of this is predictable, and that’s why there’s help, and I can help.
Dr. Jessica Higgins: Nice. Well, for couples that one of the partners has been recently diagnosed or has been struggling with some chronic ailment, or perhaps a life-threatening illness, they’ve already been in it – what would be one first step that you would encourage them to do?
Dr. Jackie Black: Oh, I love this question. The first step is don’t think it’s too late; it is never too late. I like to talk about this in terms of a dance. Dr. Jessica, if you and I were in a dance, and I changed the step, you and I might not be dancing the same dance, but we would no longer be dancing the dance we were dancing. It would be different.
Any small shift or change that either partner makes in a relationship will change the entire relationship. It’s like the pebble that you throw into the water, there’s a ripple effect.
Our relationships are alive, and these are dynamics. We talk about relationship dynamics, and dynamic means energy. So there’s always energy flowing in and out, and through, around, over and above relationships and the partners, and we can shift and change any energy, no matter how long it’s been going on, no matter how far apart people are, and no matter how hopeless they seem. And even if one partner wants to do the work and the other one doesn’t, I always say “Okay, let’s do it”, because I understand how powerful one person’s work can be for the relationship.
Dr. Jessica Higgins: I couldn’t agree more. And how do people reach your offerings in the way of what you’re teaching? It sounds like you have workshops… Do you have other resources that people can engage with?
Dr. Jackie Black: There are three ways to partner with me. I have a 7-week online transformational experience, sort of a Do-it-yourself. It’s online, and everything is there for you. With the online program, I’m available for a one-hour Q&A call, a community call for six months. So even though you get all the information in seven weeks, you actually have access to me for six months.
What I tell people is if you want access for another six months, we can do that, however long people want access to me on our live community calls.
Then I have a three-day private destination retreat that’s amazing. People say “I want it, and I want it now.” There’s a beautiful retreat hotel there, in the lap of luxury for three days, and they have me from nine in the morning until six in the evening. Then they have evenings by themselves. It’s a beautiful part of town, they can walk around…
Dr. Jessica Higgins: Where are you?
Dr. Jackie Black: I’m in Panama City, Panama, Central America.
Dr. Jessica Higgins: I didn’t know that…!
Dr. Jackie Black: Yeah, and it is an incredible experience to be here. The food is all fresh and wonderful, and the people are warm and welcoming… The retreat hotel is a very special experience; they don’t have to ever leave the hotel if they don’t want to.
The other way to work with me is people decide that they want to work with me regularly, with regularly scheduled appointments, and that’s possible in a 9-month private coaching program. And again, if people want more after nine months, we’ll work together as long as people want to.
Dr. Jessica Higgins: Gotcha. And where do people find you?
Dr. Jackie Black: My website is DrJackieBlack.com.
Dr. Jessica Higgins: Wonderful. I’ll make sure that that link is on today’s show notes. Is there anything else that you wanna mention before we sign off?
Dr. Jackie Black: Thank you… I just wanna say that this is doable. Reigniting the spark between you, reconnecting your hearts, reinvigorating enthusiasm for yourself and for your marriage, for your partner is doable, and if you wanna get that done, I’m here to partner with you.
Dr. Jessica Higgins: Lovely. Thank you so much, Dr. Jackie Black. Thank you for what you’re doing in the world, helping couples feel supported and really transform their relationships, especially when enduring such difficult circumstances. Thank you.
Dr. Jackie Black: Thank you so much for the opportunity to talk about this, I really appreciate it.
Dr. Jessica Higgins: I hope you have enjoyed today’s interview with Dr. Jackie Black. Again, if you would like access to the links she mentioned, you can visit today’s show notes on DrJessicaHiggins.com, click on Podcast and find the most recent episode there at the top. Again, today’s episode is 154, “How to get relational support when dealing with illness and chronic pain, with Dr. Jackie Black.”
Until next time, I hope you take great care.
* * *
You’ve been listening to Empowered Relationship, your relationship guide. Remember to take a moment to write a review and subscribe today. You can also get your free relationship gift by visiting DrJessicaHiggins.com.
0 Comments