How to Reclaim Intimacy When You’re Chronically Sick

Like many chronic illnesses, persistent Lyme disease can wreak havoc on your hormones, resulting in loss of libido and sexual dysfunction, among other painful symptoms. This can strain relationships just at a time when partners need each other’s support the most. Dr. Joseph Trunzo, a psychologist and the author of Living Beyond Lyme: Reclaim Your Life from Lyme Disease and Chronic Illness (Changemakers Books, 2018), spoke with Project Lyme about how individuals can preserve intimacy in their relationship while coping with Lyme disease or chronic illness.   

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Project Lyme: What is one of the most common problems you see in couples where at least one partner has Lyme disease or chronic illness?

Dr. Joseph Trunzo: The “knowledge gap.” There’s a lot of different information about Lyme in the medical communities, so that can filter into relationships. Anybody who has, or who has had Lyme, for an extended period knows that it’s an invisible disease. It’s not something that you can easily see. And depending on what you’re reading or where you’re reading, two people might be reading completely different information about what Lyme can do and about treatment approaches and strategy and diagnosis and all that kind of stuff.

So, partners are not immune to believing different things or going down different paths in terms of where they’re at on their illness journey. That can be really hard because Lyme is a difficult enough thing to go through on your own without feeling like your partner is in a completely different place. And it’s not always the partner of the patient who doesn’t believe in what’s going on. Sometimes it’s the patient who’s in denial, and the partner is trying to move them towards the Lyme diagnosis or towards a particular form of treatment. It’s hard for the medical community to be on the same page about what Lyme is—it can be really hard for couples to be on the same page about what Lyme is and what needs to be done. So it can be a sort of microcosm of what the larger problem is in regards to Lyme, and that doesn’t even touch all the other tick-borne diseases that a lot of people aren’t even aware of or know about. 

Project Lyme: What happens when a couple already has issues, and then Lyme enters the picture?

Dr. Joseph Trunzo: If there are any preexisting problems in the relationship—and there usually are; I mean, no relationship is perfect—but any chronic illness, especially Lyme, can have a tendency to exacerbate those problems. If there are communication issues, if there are issues around closeness or intimacy or sharing… all these sorts of things can really become much more prominent. Parenting and financial issues also become more problematic. Sometimes a chronic illness will unite a couple and will actually help them to be more solid and to sort of rally and resolve some of those issues. That can happen. But I think, more often than not, the already existing cracks or fractures in a relationship will get worse. 

The other thing that often gets underplayed is this phenomenon of the identified patients. There’s the person who’s sick, and then that’s where all of the resources and the needs tend to flow, and then the well partner or the well person[s] in the family, their needs often get overlooked or sidelined. And that can be really problematic, because even though there’s one person in a relationship that might have the medical illness, there are emotional needs of everyone, not just in the couple but also in the overall family. And that can be really hard for everyone involved.

Project Lyme: And what mistakes do couples make that exacerbate these problems?

Dr. Joseph Trunzo: Number one, and this is not specific to Lyme, but in any couple, their communication is absolutely key. So, ideally, someone’s in a relationship where they feel like they can be open, they can be vulnerable, and they can express their needs. They can tell their partner what they want or what they don’t want. What’s helpful. What’s not helpful. So if people are either there or able to work towards getting there, then everything else becomes easier and much more manageable. And then communication facilitates intimacy. 

And as far as the intimacy piece goes, it just becomes about meeting the person where they are. So if they can’t be sexually intimate, what kind of intimacy can you have? And that could be anything from sitting on the couch together and watching a television show to holding hands to going for a walk. Intimacy is really about connection. So if you’re not able to connect in a physical, sexual way, finding other ways to connect with one another—cooking a meal together, parallel activities, or engaging in activities with one another—any of these things can be really helpful and can foster and facilitate that feeling of being connected and that feeling of being intimate, even if it doesn’t involve the act of sexual intercourse. 

Project Lyme: Are there any tools you suggest for couples who are struggling either with intimacy or communication?

Dr. Joseph Trunzo: I obviously would advocate for getting help. Because a lot of times, it’s hard to navigate something when you’re right in the middle of it, and you’re both feeling pretty lost. So, not only talking with one another, but communicating with other people. It can be a therapist, but it doesn’t have to be a therapist. It can be other people who you know really well. It could be a clergy or a pastor, or a really close friend, or a sibling or another family member. As long as everybody’s okay with what’s being shared. For couples, relying solely on one another to be able to find your way through it—if that can happen, that’s fantastic, and that’s ideal—but a lot of times you need another outside voice. And then as long as both people agree on who that outside voice can be, either for one another individually or together as a couple, then that can be really valuable in helping people to figure stuff out.

Project Lyme: And what are some helpful versus harmful ways that people can communicate about their illness? 

Dr. Joseph Trunzo: It’s just about being honest and open, and that can be hard, and that can feel really vulnerable. So people have to make their judgements about how safe they feel with their partner in sharing a lot of those things. But it just comes back to really clear communication. Our tendency when things are spiraling out of control—which is often what happens when there’s a chronic illness, particularly one like Lyme—is we try like crazy to control things. And what you don’t want to do, either with your partner or with anybody else, is to get caught in this cycle where you’re exerting so much time and energy into trying to control things that are really pretty uncontrollable. 

And when I say that, I’m not necessarily referring to the long-term outcome of the illness, because obviously there are things that people can do for treatment. And I’m not saying there’s nothing you can do, just give up, but in the moment, if someone is in pain or if someone is fatigued or if someone’s having unhelpful thoughts or they’re in a dark place emotionally, people will exercise a lot of energy and effort in trying to control what they’re thinking or what they’re feeling or what their current situation is. And most of the time, you’re basically pouring energy down a drain. So there’s this ability to figure out, okay, this is what I’m dealing with right now. There are things that I can do around this. There are things that I can’t do around this. I really wish I could do the things that I can’t do, but I can’t: It’s just not possible in the moment. So I’m going to decide to be okay with that and then just focus more on the things that I can do. 

Project Lyme: And how does this mindset affect intimacy in a relationship?

Dr. Joseph Trunzo: Someone might really, really wish that they were in a place where they’re able to have intercourse with their partner, but they just can’t because it’s painful, or they’re too tired, or it’s just not happening. Lyme begets a lot of sexual dysfunction. So rather than focusing so much on what they can’t do and what they can’t control, bring it around to: What kinds of ways can we be intimate, and what kinds of ways can we connect if that’s not what we’re able to do? And then just focus on the things that can be meaningful and important in that moment. 

Project Lyme: And if one partner is sick, are there ways that both individuals can better meet the needs of the healthy partner as well?

Dr. Joseph Trunzo: It depends on what the needs are, and it depends on the time arc. When you’re in a long-term relationship, you have to recognize there are going to be times where you know your partner’s down, and you’ve got to take one for the team. Like he or she isn’t well, and I’m going to pick up the slack for as long as I need to, because that’s what they need from me, and that’s what they would do for me in similar circumstances. If that becomes really extended, which, unfortunately, it often does, then there will need to be a readjustment. It’s like, okay, this isn’t a short-term crisis anymore. This is kind of what our life looks like. So I need to know what you need; here’s what I need or what’s meaningful and important to me. Let’s communicate and figure out how we can manage that together. 

I think the other thing that happens a lot of times when you’re in a couple is it ends up being one person against the other. It’s like, I need this, but I need this. And changing that frame of reference to what do we need. And rather than us fighting one another, let’s fight the situation and the disease and the problem. This is another way to reframe things. And when you’re fighting together against a common enemy, so to speak, that’s a form of intimacy, and it’s a form of connection. 

Project Lyme: You wrote a book called Living Beyond Lyme: Reclaim Your Life From Lyme Disease and Chronic Illness. What are some major takeaways from your book that you would recommend to people who are dealing with this type of chronic illness?

Dr. Joseph Trunzo: So you have Lyme disease. It’s turned your life upside-down, as it often does. How can you live a good and meaningful life while you’re navigating all of the difficulties around a disease as complex and potentially devastating as Lyme? The book basically outlines the approach that I use in my psychotherapy practice for people who are dealing with all kinds of chronic illness, but certainly a number of Lyme patients. And it focuses on a form of treatment called Acceptance and Commitment Therapy, also known as ACT. 

So some of the highlights go back to issues of control. As human beings, we want to control things, and we will often exercise incredible amounts of time and energy trying to control things that really are not controllable. So recognizing that, dropping that control agenda… there are certain things on a Lyme journey that you’re just not going to be able to effectively change or have real influence over. [For example,] no individual person is going to resolve the disparities in thinking about Lyme in the medical community. Right? You can’t do that. But more importantly, trying to control difficult or uncomfortable thoughts or feelings in the moment usually leads to people chasing their tails. 

Project Lyme: And what are some examples of unhelpful thoughts you see a lot of in Lyme and chronic illness patients?

Dr. Joseph Trunzo: “I’m never going to get better.” “I hate being the sick.” “I’m tired of being a burden to everyone around me.” “I’m never going to get my life back.” “How can anybody love me if I’m this sick?” “My family would be better off without me.” I could go on and on. The problem is that our mind—in the business, we call it the “monkey mind”—it just da, da, da, da. And other people will tell them, “Well, just don’t think that way.” But that’s not possible, right? We don’t have control over that chatter. 

And the very act of telling yourself not to think something requires you to think it. So, it’s a very counterintuitive and counterproductive approach, Acceptance and Commitment Therapy. The acceptance part is recognizing, okay, those thoughts are there. I can’t really do anything about the fact that they’re there, but I can make decisions about how much I want to pay attention to or engage with that particular thought. I’m not going to necessarily try to get rid of it, but I can recognize it. That thought doesn’t have to rule the roost. It doesn’t have to drive the bus, so to speak.

Project Lyme: What do you mean by not letting negative thoughts “drive the bus”?

Dr. Joseph Trunzo: It’s actually a really nice analogy in ACT called “Passengers on the Bus,” where you’re the bus driver. And your goal is to make your stops and be on time. And every stop you make, a bunch of people are going to get on, and a bunch of people are going to get off, and not all the passengers on your bus are going to be sweet, little old ladies who give you pieces of candy, because you’re such a nice person. Some of them are going to be loud, obnoxious, smelly, and irritating, and you want more than anything for them to get off your bus. But if you stop the bus and start arguing with them, all you’re really doing is prolonging the amount of time that you’re spending with them. And you’re engaging in conflict, and you can’t really throw them off your bus, because it’s your job to get them to where they need to be. 

And now, all of a sudden, you’re behind on your bus route, and you’re not moving your life forward because you’re over-engaged in trying to control this passenger or this thought or this feeling that you really don’t want to have. But the more you try to control it, the more stuck you end up. So the idea is all of those uncomfortable thoughts and feelings are just passengers on the bus, and your job is to just keep driving the bus. And, eventually, what is going to happen to those uncomfortable thoughts and feelings is that they’re going to get to their stop, and they’re going to get off the bus. 

Project Lyme: And what are some ways that Acceptance and Commitment Therapy can help partners who are struggling with intimacy issues?

Dr. Joseph Trunzo: A big part of ACT is acknowledging and accepting that there are going to be things that are uncomfortable, but identifying the things that are really important and meaningful for you: I want to try to be the best mom that I can; I want to try to be the best dad that I can. The best wife. The best husband. These are the goals. They’re things upon which you base all of the decisions that you’re going to make in your life. So, you might not feel well enough to get to your kid’s baseball game. But when they come back, you might feel well enough to sit and talk with them and have them tell you about it and engage with them. So be that kind of value-driven person, instead of pouring all of your energy into feeling terribly about the fact that you can’t be at the game. Find a way to connect with them; you always want to be driving the bus, and if you know what your values are, and what’s really meaningful and important to you, you just keep moving in that direction, even if it’s just a little, teeny-tiny bit. 

And when you’re really sick, it’s probably not going to be as big of a step as you would like. But any little bit that you’re moving in that direction, rather than being engaged in trying to wrestle control over something you don’t have any control over it, it’s going to lead to a better outcome for you and for the people around you. 

Project Lyme: Does this apply to intimacy issues too?

Dr. Joseph Trunzo: All of that applies. We may not be able to have a vibrant, awesome sex life like we used to, but you operate under the assumption that it’s still important for the couple to be connected and to be intimate in some way. So what way can we do that? And right now, that might not involve intercourse, but what kind of intimacy can we connect over? And that’s the overriding principle. 

A lot of people have a tendency to focus on what’s not there versus what is. And that’s just going to breed a lot of resentment and negative feelings. It just goes back to meeting people where they are. What can we do? How are we able to connect? And if you shift your focus to those things, it gives you a better sense of control, which generally helps people to feel better. And again, it’s just moving you in that value direction, in whatever way it’s possible for you at the moment. 

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For more on this topic, check out Dr. Trunzo’s TED Talk: “Living well when you don’t feel well: overcoming Lyme disease and illness.”