Introduction

Sickle cell disease (SCD) imposes significant physiological and psychosocial burdens on diagnosed individuals and the relational systems, couples, and families intimately involved in their care. Living with a chronic condition such as SCD is associated with higher rates of depression, anxiety, and challenging mental health outcomes for both patients and their broader family systems (Bruzzese et al., 2023). SCD also strongly shapes systemic experiences throughout the life cycle, particularly during young adulthood and relationship formation. For young adult couples, the episodic nature of pain crises and other medical complications impacts daily functioning, inhibits the ability to maintain a high quality of life, and creates chronic interruptions and imbalances in interpersonal dynamics (Matthie et al., 2016; Wickersham et al., 2022).

Despite a robust broader literature on how couples cope with illness generally (Berg & Upchurch, 2007; McDaniel et al., 2014; Rolland, 2018), a critical gap remains focused specifically on SCD. Empirical research rarely examines young adult couples’ shared management of SCD, a condition uniquely marked by unpredictable pain crises, a shortened life expectancy, and systemic discrimination within the healthcare system (Bulgin et al., 2018; Harris et al., 2019). To address this gap, Medical Family Therapy (MedFT) literature must explore how young couples contend with these illness-specific nuances and intersecting identities within their relationships.

Relational systems have immense potential to support individuals facing chronic conditions and can profoundly affect both physical and psychological health outcomes (Berry et al., 2017; Jonsdottir et al., 2021). Yet, too little attention has been paid to understanding the structural challenges, emotional burdens, and dyadic adjustments that young couples face, specifically when dealing with SCD. Current research primarily treats young adults with SCD as isolated individuals focused on self-management. Existing relational literature largely centers on pediatric family support or reproductive decision-making around genetic risk, offering minimal insight into the ongoing adjustments and broader impact of living with SCD during young adulthood (Bruzzese et al., 2023; Gallo et al., 2010; Roberts et al., 2025), leaving relational coping and long-term dyadic adjustment significantly under-examined. Identifying strategies to support these dyads requires a paradigm shift that considers SCD’s systemic impact across adult life stages and milestones, calling directly for partner-focused research.

To address this need, the present work sought to clarify how couples manage SCD’s shared reality and explored the explicit meanings they assign to illness in their relationship. Employing a systemic framework, the authors applied transcendental phenomenology to explore young couples’ lived experiences. The study’s aim was to identify structural challenges and unique strengths in relationships among young adults with SCD, with a focus on shared struggles and resilience. Ultimately, these researchers aimed to inform how medical family therapists and other systemically oriented providers can tailor their work to meet the unique needs of couples facing the complexities of SCD.

Theoretical Frameworks

This work used social construction theory and family systems theory (Gergen, 1985; Kerr & Bowen, 1988) as theoretical guides. Social construction theory maintains that meanings and understanding develop through social interactions, communication, and shared perspectives. Family systems theory views the family as an interconnected unit in which each person’s actions affect the whole. These theories show that ongoing interactions with the environment and relationships shape lived experience. Meanings emerge from social discourse, cultural norms, and shared perspectives. Social construction theory serves as a tool for understanding how couples with chronic illness create shared meanings. Couples use partnership, family background, and feedback from schools, workplaces, and medical providers (Mejía & Gonzalez, 2017). This helps them relate and manage illness challenges. Family systems theory complements by showing how individuals connect with one another (Kerr & Bowen, 1988). It explains how couples rely on mutual understanding, adapt roles, and change their relationship in response to illness.

Literature Review

Sickle Cell Disease

Sickle cell disease (SCD) is a genetically inherited chronic illness that is especially common in marginalized communities. According to the Centers for Disease Control and Prevention (CDC, 2024), over 90% of those affected are African American and 3–9% are Latinx. SCD results from inheriting two altered hemoglobin genes, causing sickle-shaped red blood cells that limit oxygen delivery (Long et al., 2011; National Heart, Lung, and Blood Institute [NHLBI], 2022). SCD may reduce life expectancy by about 20 years and cause anemia, infections, acute chest syndrome, stroke, and pain crises (CDC, 2024). Besides its physiological toll, SCD brings psychosocial challenges such as poor relational functioning and financial instability (Boucher et al., 2023; Wickersham et al., 2022). These are shaped by the healthcare system, marginalized identities (such as chronic illness or racial/ethnic identity), and the demands of managing illness throughout life (Crusto et al., 2025; Harris et al., 2019).

Young Adult Couples and Chronic Illness

Chronic illness often disrupts relational dynamics, which can create relationship imbalances, alter the conceptualization of individual versus shared coping, require couples to reorganize shared employment responsibilities, and transform shared decision-making processes (Sheehan, 2020; Shrout et al., 2024; Zaider & Kissane, 2011). These arise from partner beliefs, adaptability, and responses to change. How couples respond to life changes is complex. Young couples may feel embarrassed or resentful because of increased dependence and interrupted routines. Feeling “different” from peers or missing milestones can lead to guilt or disappointment (McLaughlin et al., 2017; Nutting & Grafsky, 2018; Palmer & Boisen, 2002). These challenges might cause role confusion, felt loss of control, and lower well-being for partners in relationships (McDaniel et al., 2014; Shrout et al., 2024). For young adults starting careers or families, illness-related stress may worsen relationship quality and make coping more difficult (Helgeson et al., 2018).

Couples with SCD must handle relational imbalances that affect treatment decisions and managing the household. They also face discrimination and must adjust to the reality of the disease (Zaider & Kissane, 2011). Although broad dynamics have been documented, little research has examined how young couples work together to manage SCD’s episodic and daily challenges.

Few studies examine the mutual strategies young couples with SCD use to handle the disease day-to-day and during episodes. Most research focuses on the individual rather than on how couples manage challenges together (Crosby et al., 2015; Derlega et al., 2014, 2018). Understanding these collaborative dynamics reveals how relationships influence physical and psychosocial health, highlighting a couple’s capacity to protect individual emotional well-being while maintaining the shared relational support necessary to navigate the illness experience.

This qualitative study used family systems and social construction theory to examine SCD’s impact on young adults in intimate partnerships. The primary aim was to apply the theories and methodologies to move beyond the perspective of independent disease management and to show how partners understand illness, adapt to roles, support each other, and cultivate shared resilience in the face of systemic, structural, and illness-related challenges.

Methodology

Prior to initiating this study, protocol approval was obtained from the Loma Linda University Institutional Review Board (IRB). This qualitative study utilized a transcendental phenomenological approach to explore how young adult couples navigate the complexities of sickle cell disease (SCD). Developed by Edmund Husserl (1970), transcendental phenomenology is a qualitative method for understanding human experience by focusing deeply on individuals’ subjective perceptions and interpretations of events (Lester, 1999). This approach directly integrated with the study’s guiding systemic frameworks. Grounded in family systems theory (Kerr & Bowen, 1988), the design recognized the couple as an interconnected unit, acknowledging that the illness-specific nuances of SCD, such as unpredictable pain crises and shortened life expectancy, profoundly shaped the broader relational system. Further, drawing on social construction theory, the design examined how partners navigate these complex challenges to create shared meanings through their daily social interactions, communication, and feedback from their systemic environments (Gergen, 1985).

To operate these intersecting frameworks, the transcendental phenomenological approach required researchers to employ epoché, or bracketing, which is a process of consciously setting aside prior assumptions and objective ideas to capture the phenomenon purely through each participant’s unique meaning-making system (Moustakas, 1994; Rodriguez & Smith, 2018). Utilizing this approach allowed researchers to view the chronic illness experience dynamically through each partner’s perspective within the relationship, focusing explicitly on each partner’s internal understanding of the illness. Concurrently, it provided a rigorous framework to examine the external, social-constructionist ways in which couples collectively support each other, adapt roles, and systemically orient themselves around the illness (Rodriguez & Smith, 2018). By synthesizing transcendental phenomenology with systemic theories, the method effectively isolated both the core individual subjectivities and the shared relational realities that dictate adaptation and psychosocial outcomes for these dyads.

Sample and Recruitment

Convenience and snowball sampling were used to recruit a national sample of young adult couples. Recruitment took place through study flyers shared online via social media, virtual support pages (e.g., Sickle-Cell.com, Facebook: Sickle Cell Family and Friends Support Group, Sickle Cell Talk and Support Group, and Reddit Support Groups: r/SickleCell), and community-based support groups (e.g., Cayenne Wellness Center, Sickle Cell Association of New Jersey, and Sickle Cell Disease Association of America). Interested participants determined their eligibility by completing an online screening survey.

To distinguish partners who have been living with SCD since birth—as they carry the genetic markers for the expressed form of the disease—this text refers to these individuals as SCD-P1. The authors recognize that partners who are not born with a genetically expressed form of the disease, but who live with the illness through their relationship make up the corresponding portion of the dyad; these individuals are referred to as SCD-P2.

The inclusion criteria required that couples: (a) be in a monogamous relationship in which only one individual has been diagnosed with an expressed form of SCD (not sickle cell trait); (b) both be available to participate in the study; (c) both be young adults between the ages of 18 and 40; and (d) have been in a relationship for a minimum of one year. Initially, the upper age criterion was set at 35 years; however, due to recruitment challenges and immediate interest from several individuals aged 36 to 38 years, the range was revised to include 18- to 40-year-olds. Additionally, partners did not have significant age gaps, with none exceeding 5 years. The minimum relational duration of 1 year was established as a baseline because SCD-P1 participants have lived with the disease their entire lives. This duration allowed SCD-P2 partners sufficient time to develop a nuanced understanding and experiential insight into their partner’s chronic illness dynamics.

A final sample of nine couples (N = 18) was recruited between August 2021 and February 2022. Of the SCD-P2 participants, 67% identified as male and 33% as female; demographically, 67% were African American, 22% European American, and 11% Hispanic/Latinx. The SCD-P1 participants were exclusively African American, with females representing 66% and males 33% of the sample (see Table 1).

Data Collection

Each dyad member was interviewed separately by a member of the research team. Methodological literature suggests that when interviewed together, partners may alter their responses to match their partner’s perceived or known views (Taylor & de Vocht, 2011). Given the study’s objectives and its systemic framework, individual interviews were determined to be the optimal approach to allow partners to freely discuss their unique perspectives, vulnerabilities, and relational experiences without constraint.

To maintain consistency, semi-structured interview guides were developed. The questions across the guides were structured to mirror one another, thereby capturing the shared illness experience while accounting for everyone’s distinct vantage point in the relationship (see Appendix A and B). For example, SCD-P1 participants were asked, “What was your experience in telling your current partner that you have SCD?” The mirrored question for SCD-P2 participants was, “Can you tell me about learning that your current partner has SCD?” Interviews were conducted virtually, lasted 60–90 min, were audio-recorded, and then later transcribed verbatim for analysis. Each participant received a $10 gift card upon completion.

Data Analysis

Transcendental phenomenological methodology was utilized for data analysis, facilitated by the computer-assisted qualitative data analysis software NVivo. The data analysis process was driven by two members of the research team. Analysis began with initial, open coding to isolate both the raw individual descriptions and the distinct meanings developed from each partner’s position within the phenomenon (Moustakas, 1994). To ensure a true dyadic analysis, the transcripts were examined concurrently by the lead researcher and the co-investigator to identify shared and divergent perspectives within each couple. Shared experiences of illness were captured through overarching themes that integrated individual perspectives with collective relational meanings. These themes were systematically constructed by first analyzing each partner’s individual experiences independently and then synthesizing them at the dyadic level (SCD-P1 and SCD-P2 combined). The two primary coders held consensus meetings to discuss the developing codes and resolve any conceptual variations in how the themes were formed and coded.

To ensure the trustworthiness, reliability, and validity of the findings, the research team implemented multi-level measures targeting the researcher, participants, and reviewer levels (Creswell & Báez, 2020). At the researcher level, continuous bracketing and reflexive journaling were utilized throughout the analysis to track and set aside potential personal biases. At the participants’ level, voluntary member checking was introduced after the primary analysis. All participants were contacted, and three couples (N = 6) chose to participate in voluntary member-checking sessions. These couples reviewed the synthesized findings and confirmed that the identified themes accurately and effectively captured their lived relational experiences.

Lastly, at the reviewer level, an independent peer reviewer, familiar with qualitative methodology and the study’s systemic objectives, conducted a comprehensive peer debriefing of the data and coding structure (Creswell & Báez, 2020). The peer reviewer provided critical feedback regarding how the individual functionalities of the partners and their shared systemic beliefs were being integrated. These suggestions were operationalized during the final theme revision by shifting the narrative write-up from descriptive reporting to a functional explanation of how these couples actively used their shared beliefs and communication patterns to navigate structural healthcare barriers and maintain relational stability.

Results

Based on our dyadic analysis of the participants’ data, the research team identified six themes (see Table 2). These themes captured how partners, given their positions in the relationship, made sense of their individual experiences and shared perspectives that influenced the couple’s navigation of the illness. The six themes were organized into three groups based on partners’ individual and shared perspectives.

Group 1: Perspectives of SCD-P2

Through their observation, partners not born with a genetically expressed form of the disease (SCD-P2) are continually working to understand how they fit into the pre-established relationship between the illness and their partner. This understanding was conceptualized through their lived experience with illness, expectations of what it means to be a caregiver to a partner with a chronic illness, and commitment to their partner.

A unique aspect of relationship formation is that SCD-P2s often commit to their partner before they understand the gravity of what it means to live their lives in relation to the illness typology. Through our exploration, the research team identified two themes that capture partners’ understanding and navigation of the illness from their position in the relationship.

I Must Adjust to the Relapsing Nature of the Illness

At the onset of the relationship, partners were tasked with getting to know the illness and their partner’s relationship with it. SCD-P2s were bystanders to the impact that illness had on their partner’s life and were often taken aback by the toll the disease had on their partner. In the following quote, a partner from Dyad 4 discussed the impact of witnessing their partner struggle with symptoms associated with the illness:

“We were going bowling. I believe we were doing all kinds of activities, and then to see a person go from that level down was like something I’ve never seen before. Yeah, and I’ve seen people get colds, I’ve seen people, you know, be under the weather. I’ve seen stuff like that, but I have never seen someone’s body attack them in that form before, you know, and it’s really nothing you can do about it…” (SCD-P2, Dyad 4).

The episodic nature of the illness consisted of vacillating periods of remitting pain and acute crises, in addition to other complications to which the couple had to adapt. It was in this context that SCD-P2s had to adjust their routines to tend to their partner’s needs during a crisis. The following was an account from a partner who reflected on their experience of volleying between various periods of crisis and normalcy, and the continuous adjustment needed to respond to their partner.

“Most of the time, it’s really hard to plan because on Friday night or even that day, she will start having sickle cell pain, and the plan will get scrapped. So we have kind of stopped planning things, but on the flip side, whenever she does have energy, and she feels good or isn’t in pain, she will want to go out and do stuff. That kind of throws me off my schedule because I may be in the middle of my work or doing something else, but I feel like I have to because she is feeling good. I feel like that’s kind of a main struggle in our relationship; just trying to find a balance.” (SCD-P2, Dyad 7).

In their adjustment to the relapsing nature of the illness, SCD-P2s were always aware of the likelihood of an impending crisis and often considered illness in their daily lives. Partners acknowledged the impact of the unpredictability of relapsing illnesses on their engagement with it and reflected on the challenge of maintaining balance amid its unpredictability and uncertainty.

Knowing my Role is Essential in This Shared Experience

In addition to adjusting to the relapsing nature of the illness, SCD-P2s also believed that part of this adjustment required them to understand their role in relation to the illness as it ebbed and flowed between periods of remitting symptomology and active crisis situations. Given the likelihood of an impending crisis, SCD-P2s constantly negotiated "normal" and "caregiving" ideologies. They were tasked with learning the proper balance between acting as a caregiver versus an intimate partner, while still respecting their partner’s need for autonomy during phases in which crisis and other symptomology had remitted. SCD-P2s learned that their role as caregiver and advocate was needed; however, it had to be adjusted when it was no longer necessary and infringed on their partner’s autonomy. We saw a partner from Dyad 6 reflect on the negotiation between periods of normalcy and caregiving, the challenge of transitioning between the two, and their partner’s efforts to communicate that caregiving was no longer needed.

“I either, you know, the couch tent’s been up for four days, and so I’m just assuming I’m by myself, and at some point the couch tent goes away, and I’m still operating the same way for a while. [SCD-P2 states they suggest to their spouse] Yes, I, you know, I’m in a mode, so then you have to tell me, ‘Hey, I’m ready to take on extra.’” (SCD-P2, Dyad 6).

In the previous quote, the partner referenced the “couch tent.” This referred to periods in which their partner was “camped out on the couch, enduring a pain crisis.” When the "couch tent" was up, in the context of this relationship, it signified to the SCD-P2 that additional support around the house and caregiving was needed. However, the SCD-P2 noted the difficulty of transitioning out of their role as caregiver even when the “couch tent” had been taken down and their partner was attempting to resume “normalcy.”

For SCD-P2s, this experience could at times be an ambiguous and nuanced “dance.” It could challenge their beliefs and perceptions about what it meant to be involved in, or to support, their partner in managing the illness, in line with their partner’s beliefs. Given this ambiguity, SCD-P2s often opted to work collaboratively, acknowledging their lack of lifelong experience with the illness. Furthermore, they sought clarification from their partner regarding their role. SCD-P2 reflected on their experience of understanding their role in relation to the management of the illness:

“I told him…, Let me know what my role is. I don’t want to be in your face. Can you tell me what you need? I don’t want to be in your face telling you, ‘Do this.’ … You need to vocalize it to me so I can give you that space you need.” (SCD-P1, Dyad 2).

Group 2: Perspectives of an SCD-P1

While SCD-P2s worked to adjust to life with the illness and understand how they had to orient themselves to it, SCD-P1s had spent their entire lives with the illness. Given this, they understood both who they were in relation to the illness and the impact(s) the illness could have on their support systems.

The Relapsing Nature of my Illness Has an Impact on my Partner

Individuals with SCD have had lifelong experience with the illness. They knew their partners were working to understand how they should orient themselves to it. SCD-P1s acknowledged that the relapsing nature of the illness created unpredictability and uncertainty in the daily lives of SCD-P2s. A partner from Dyad 1 reflected on how their partner reacted to the unpredictability of the illness:

“So like, I don’t know what she has planned, or I don’t know what she’s doing, but if I end up having a crisis or having pain or something, she will put everything down and ask me, ‘What do I need?’” (SCD-P1, Dyad 1).

Furthermore, SCD-P1s acknowledged that the unpredictability and uncertainty surrounding the illness created ambiguity for SCD-P2s. Mainly, they could be fixated on their role as caregivers and had trouble creating space for their autonomy. A partner from Dyad 5 reflected on the challenge of volleying between periods of “caregiving” and “normalcy” with their partner:

“I feel like he thinks that he can help more. [After a crisis] Like, he’s still trying to help and help and help. You know. It’s like, sometimes I want to do it on my own because I’m okay, I can do it now, because if I don’t ever do it, I never, you know, get back to doing it.” (SCD-P1, Dyad 5).

My Experience with SCD Shapes Who I Am

Throughout their lives, SCD-P1s came to understand not only the toll that the illness took on them, but also the toll it could have on those with whom they were in a relationship. Their perception of themselves, given this understanding, was complex, as they identified the strengths and resilience needed to live with this disease and its weaknesses. A reflection from an SCD-P1 reflected on the strength and resiliency they had acquired in navigating this experience of illness:

“And I feel like it also made me a stronger person. Um, you know, sometimes it’s kind of funny to hear myself say that because a lot of times, I’m kind of hard on myself. I will feel like I will have weak moments, but in those moments that I think I’m being weak, it’s because I’m dealing with so much, and I’m pushing through. And I feel like I have to just give myself grace.” (SCD-P1, Dyad 4).

However, when considering themselves in the context of an intimate relationship, SCD-P1s might not have been naturally inclined to operate with this strength. Instead, partners maintained awareness and operated under the belief that the illness made them a burden or weak to those they were in a relationship with due to the SCD-P2’s need to transition into the role of a caregiver at any moment. A partner from Dyad 6 reflected on this burdening feeling and their perception of the impact that it could have on the relationship:

“Yeah, like, what do you do? Drag someone down with you and, you know, make them a potentially young widower, you know what I’m saying? Just because, like I used to think to myself, like maybe I should just let him go live, I mean, early on in the days, but you know, like maybe I should free him because you feel like in order to be in a relationship with me, you have to be in this cage.” (SCD-P1, Dyad 6).

Group 3: Shared Perspectives

Given their positions in the relationship, partners had developed their own understandings. However, the data also suggested that partners shared perspectives that influenced their joint navigation of the illness.

Always be Flexible

Both partners understand that SCD is unpredictable and can be inconvenient in their daily lives. Given the illness’s relapsing nature, partners are aware they must maintain flexibility. They must always be prepared for when the illness impacts the relationship. The following is a reflection from Dyad 8 on navigating the unpredictability of the illness:

“Sickle Cell is a very nuanced disease, and what I mean by that is it shows up at the worst possible time, and you’re just like, seriously, yeah, where’d you come from? Can you just go back into hiding for like the next five hours, please? Yeah, maybe next week, you know. I mean, in reality, no time is ever a good time to run into a crisis or to have a complication.” (SCD-P1, Dyad 8).

Couples were also aware of the impact that SCD had on the lifespan and the reality that a complication could bring about loss of life. This awareness shifted the couple’s perspective toward appreciation for life and influenced their acceptance that flexibility was necessary but not always easy. An SCD-P2 reflected on the awareness of the life-threatening nature of the illness:

“I’m not gonna say it’s not scary to think about, like, she could be gone because of this, you know, or just all of a sudden, you know, we might have to go to the hospital. That’s not easy, but if you love somebody, it’s all worth it.” (SCD-P2, Dyad 3).

Collaboration is Key

Couples had a shared understanding that navigating illness meant maintaining open lines of communication and staying committed to working together to endure the challenges it brought. Communication regarding the “logistics” of illness advocacy when accessing the healthcare system, SCD management, and the impact of the illness on plans was a necessary part of the dialogue that couples learned to engage in. The following was an account from a participant reflecting on the planning the couple had to engage in:

“So it’s like, we got to get her [couple’s child] in the car downstairs. And then at the same time, as I said, I’m sitting here limping; it’s hard for me to walk. And, you know, we got to the point where we came up with a plan on how we’ll be able to get both of us [SCD-P1 and their child], you know, out of the house and things like that.” (SCD-P1, Dyad 5).

Discussions about the logistics of the illness may be commonplace in a relationship. However, couples noted the challenges of being vulnerable with one another about the emotional impact of the illness, both individually and relationally. One participant shared the challenge of discussing the emotional impact of the illness:

“Maybe a little disconnected in some ways, whereas it’s like I have this thing. It doesn’t let me feel like I’m fully human or like a man in the toxic way, where I should be able to do anything. Learning to be vulnerable with this has taken some time, and it comes in waves: it’s like, okay, I can be vulnerable about this.” (SCD-P1, Dyad 9).

However, some couples had learned to move past discussions of logistics and onto conversations about the impact the illness had on the relational dynamic. These couples noted the positive implications of this type of communication on the shared navigation of the illness experience. A partner from Dyad 2 reflected on the impact of learning to communicate more openly about the impact the illness could have on the relational dynamic:

“It’s kind of like, you know, when we say things, often we don’t realize that we’re saying them, and so I might hear her complaining about an ache, not feeling well, and so I tend to maybe want to stay away or give her space and and she doesn’t realize that she is saying it instead of me just asking, "Hey do you need space?" Those are the times when she wants people around or wants companionship and company. That was me, kind of me, taking cues that weren’t necessarily being thrown to me and learning to just, you know, communicate and ask the question instead of just assuming.” (SCD-P2, Dyad 8).

Participants’ responses highlighted the nuances that partners navigated regarding SCD. Couples had to navigate the illness’s symptomology while tending to its impact on the relationship’s dynamic. Partners’ perspectives focused on how they responded to the illness’s presence in their relationship and how they engaged with their significant other.

Discussion

This qualitative investigation aimed to understand the lived experiences and systemic perspectives of young adult couples navigating sickle cell disease (SCD). The study produced six overarching themes (see Table 2) that unpacked the distinct individual and shared perspectives informing how these dyads collectively navigated the chronic illness experience. Partners’ unique understandings of the illness directly informed how they supported one another, made necessary adjustments, and systemically oriented themselves around the illness. These findings highlight the fundamentally systemic nature of the chronic illness experience, demonstrating that SCD profoundly impacts both the diagnosed individual and the broader relational system. This investigation underscores that the systemic impact of a relapsing condition extends well beyond independent patient dynamics, deeply transcending into the subtle nuances of daily relational functioning.

The results suggest that two distinct vantage points must be considered when conceptualizing a couple’s shared illness experience. Specifically, partners without the diagnosis (SCD-P2s) must fundamentally shift their conceptualization of what it means to maintain an intimate relationship with a partner who has a relapsing illness which they have lived with the entirety of their life. These partners learned that they had to constantly adapt to the unpredictable trajectory of the disease, a process that frequently challenged their ability to transition smoothly between periods of relational "normalcy" and active "caregiving." The broader systemic literature notes that the specific adjustments individuals make in relation to chronic conditions are highly contingent upon disease onset, course, outcome, uncertainty, and an individual’s overall understanding of the illness (Berry et al., 2017; Higham et al., 2013; Rolland, 2018). Consequently, adaptation to the illness trajectory serves as a necessary and continuous component of shared dyadic coping, regardless of the specific medical diagnosis (McDaniel et al., 2014).

This research highlights the chronic strain and psychological burdens that SCD-P2s faced during these relational transitions. As partners learned more about the illness and witnessed the intensity and severity of the symptoms and complications, they became inclined to prematurely maintain their role as caregivers, even during a remitting or crisis-free phase of the illness. Partners’ preconceived ideas and family-of-origin scripts often influenced these ways of functioning and shaped their internalized definitions of what it meant to care for an ailing partner.

This pattern aligns with Medical Family Therapy (MedFT) literature, which suggests that past or present experiences with illness heavily dictate how partners function around health crises within their current romantic relationships (Berry et al., 2018; Helgeson et al., 2018; McDaniel et al., 2014). These protective caregiver perspectives may directly conflict with those of the diagnosed partner, serving as a primary source of relational tension as the dyad worked to establish a cocreated approach to illness management.

The protective behaviors and over-functioning patterns that SCD-P2s developed as they oriented themselves to the illness highlight an urgent need for partners to collaboratively establish clear boundaries and explicitly negotiate roles and expectations surrounding the transition between crisis and non-crisis situations (Wawrziczny et al., 2021). Given their lifelong lived experience with the condition, individuals with SCD (SCD-P1s) were aware of their needs and had familiarity with the role that a non-romantic caregiver had played in their lives and made attempts to carry this framework into their establishment of a new caregiver dynamic with their romantic partner. However, given the duality of their relationship, partners (SCD-P1s) noted similar complications in role ambiguity as they attempted to adjust their relationship to account for the experience of illness.

SCD-P1s highlighted significant challenges in maintaining personal autonomy as their partners struggled to transition back into an equal relational role, creating profound imbalances before a stable boundary was established. Relational imbalances frequently arise when a couple is unable to flexibly shift out of the rigid patient–caregiver binary (Benoot et al., 2020). To protect relational stability, couples must intentionally negotiate caregiving boundaries and continuously learn to shift between two distinct forms of relating: acting as "patient–caregiver" during active crises and functioning as "equal partners" during periods of remission, maintaining a "we" orientation (D’Arrigo-Patrick et al., 2020; Rolland, 2018; Sheehan, 2020).

The lifelong lived experience of SCD-P1s profoundly shaped their self-concept and perception of themselves within intimate relationships. Diagnosed partners maintained an acute awareness of the illness’s inherently burdensome nature due to its unpredictable course and structural uncertainty. As a result, they were often deeply hesitant to burden their partners with their physical and emotional needs. This fear of burdening systems of support is well established within the chronic illness literature and is frequently informed by a partner’s prior negative experiences with historical caregivers or medical providers (Derlega et al., 2018; Shah et al., 2019; Williams-Reade et al., 2020). Seminal writings by Derlega et al. (2018) underscore how a patient’s perception of being a burden can heavily restrict their willingness to engage necessary support systems or ask for help during a health crisis. For young adults navigating chronic illness specifically, this reality can disrupt interpersonal attachment, as individuals frequently battle feelings of embarrassment and resentment regarding their forced physical dependence on others during a developmental stage that prizes independence (Helgeson et al., 2018; Knowles et al., 2013).

Ultimately, each partner’s individual perspective converged to construct their overarching, shared understanding of the illness. The sobering reality that SCD will continuously impede and disrupt both short- and long-term plans was explicitly established between both partners. This mutual understanding forces couples to maintain a permanent stance of systemic flexibility and relational adaptability. Findings of this study suggest that these shared illness perspectives created an ongoing need to constantly adjust daily schedules and long-term milestones. The profound uncertainty surrounding the timing and pace of crises or other severe disease complications often felt incredibly inopportune and inconvenient for young couples trying to build a life together. However, through their shared lived experience, these dyads learned that daily plans had to remain fluid and revisable, and long-term planning had to always account for the sudden fluctuations of the illness. In this way, couples were tasked to navigate a felt sense of autonomy and communion (McDaniel et al., 2014; Tyndall et al., 2014). That is, they had to work to maintain a felt sense of engagement and participation in the health experience while also establishing a sense of support and collaboration in their partnership and with the health system.

Establishing this balance can be cumbersome given the psychological toll that the uncertainty and unpredictability of relapsing, episodic illnesses place on family systems. Families and couples navigating these relapsing trajectories must essentially remain "on call" to cope with sudden health crises, constantly reorienting their shared lives around the episodic nature of the disease as they move forward throughout the young adult life cycle (Baudino et al., 2019; Wawrziczny et al., 2021).

Clinical Implications

Our results highlighted the importance of adopting a systems-based approach when working with young couples navigating the profound influence of a chronic condition on their relationship, ultimately aiming to promote shared coping. This aligned with medical family therapy (MedFT) literature, which emphasizes that clinicians must comprehensively understand an illness’s specific typology, including its onset, course, outcome, and degree of incapacitation (Rolland, 2018). Beyond clinical typology, it is critical to conceptualize specific systemic factors that impact how a couple collectively navigates the illness experience—most notably, the promotion of autonomy and communion (McDaniel et al., 2014; Tyndall et al., 2014). Utilizing both systems theory (von Bertalanffy, 1968) and the biopsychosocial-spiritual model (Engel, 1977; Wright et al., 1996) offers a useful framework for family therapists in healthcare settings. Utilizing this lens allows clinicians to assist young couples in negotiating romantic and patient–caregiver dynamics, establishing a collaborative relationship with the care team, and maintaining the relational fluidity required to navigate a relapsing trajectory (McDaniel et al., 2014).

Young adult couples faced a unique developmental hurdle, as navigating chronic illness during this phase of the life cycle was uncommon among their peer groups. Consequently, these couples often encountered fewer natural social support avenues and targeted resources. In this developmental stage, young adults frequently strived to establish independence, which could directly conflict with illness-related needs requiring partner or health system support. Furthermore, prior experiences with healthcare systems might have led couples to navigate the illness in isolation. Systemically oriented therapy helps couples build a shared approach to illness management, recognizing that mutual collaboration is vital for relational connectivity and health outcomes (D’Arrigo-Patrick et al., 2020). Clinicians should also support partners in accepting their individual illness experiences and personal support needs. Because both partners might feel powerless against the disease, engaging in individual resources (e.g., personal therapy, support groups) allows each person to process their unique burdens before re-engaging collaboratively as a dyad.

For example, partners (SCD-P2s) experienced significant distress navigating the relapsing nature of sickle cell disease (SCD), a task complicated by their partner’s lifelong history with the condition. As primary witnesses to acute pain crises, partners (SCD-P2s) carried an atypical caregiver burden for their age group while lacking confidants. This isolation requires clinicians to provide space for individual processing to support ongoing relational work. Similarly, diagnosed partners (SCD-P1s) remained cautious not to burden their loved ones, necessitating tailored clinical support for both members of the system. Integrated care environments offer a strategic setting for deep dialogue extending beyond logistical medical management (Hodgson et al., 2018a, 2018b). Moving beyond an individualistic medical model allows healthcare systems to provide holistic, wrap-around support to the family system.

To achieve this, interdisciplinary teams can strategically structure sessions using individual, joint, or multifamily formats (Hodgson et al., 2018a, 2018b). Systemic care begins at the initial clinical contact. Medical team members (e.g., nurses, physicians, medical family therapists) should assess the patient’s relational context and invite the partner to upcoming appointments to gauge agency, communion, and overall relational impact. Following assessment, a 30-min intervention session led by a medical family therapist can target specific health goals (Hodgson et al., 2018a, 2018b) focused on assisting couples in role negotiation, maintaining flexibility in relation to the illness, treatment planning, and navigating phase-of-life milestones. Preventive family interventions consistently yield strong therapeutic benefits (Shields et al., 2012). Clinicians can blend individual and couples’ sessions or bridge communication during medical visits to build trust with the care team (Hodgson et al., 2018a, 2018b; McDaniel et al., 2014). Ultimately, this intentional approach helps young adult couples honor personal autonomy, protect emotional well-being, and respond dynamically to relapsing illness dynamics.

Directions for Future Research

As this study used transcendental phenomenological methods to capture the meaning that informs participants’ navigation of the phenomenon, future research might explore factors that contribute to couples’ ability to engage in shared coping and to establish a co-created reality in living with SCD. Future studies might also benefit from including extended systems of support, such as in-laws, extended family, and friends. Such studies could factor in the role of these larger systems in navigating the illness experience.

Future work could also benefit from understanding the specific factors that influence couples’ abilities to adjust, support, and maintain consideration of the illness within the context of their relationship. Specifically, for couples with intersecting identities—such as identifying as a person of color while navigating an episodic condition like sickle cell disease (SCD)—it may be useful to expand upon existing literature. Research should aim to understand what role holding a marginalized identity plays in the individual and shared coping experience of navigating an illness, as well as how the larger social and structural environment dictates a couple’s ability to navigate the experience together. While this study highlighted what couples have learned, future work could provide more depth in understanding the factors that inform these outcomes. Lastly, it might also be helpful to explore the impact that illness has on both physical and emotional intimacy within the relationship as the symptomology persists and the physical and emotional impact of the illness endures.

Limitations

This study has several limitations worth noting. First, the decision to interview partners individually restricted our ability to gather insights that might have emerged if they had been interviewed together. By conducting separate interviews, we missed opportunities to observe partner interactions and how couples navigate differing perspectives. An initial barrier we faced was the age inclusion criterion, which was set at 18 to 35 years. As a result, several interested participants fell outside this range, prompting us to adjust the age limit to 18 to 40 years.

Additionally, the authors of this work recognize that potential disparities based on race/ethnicity are particularly relevant to this patient population and extend beyond the scope of this work. The researchers do recognize that this aspect of their shared coping may be missed if they do not explore it more directly in partners’ lived experiences.

Lastly, the researchers noted challenges the recruitment process. Recruiting young couples in which one partner has sickle cell disease (SCD) who were willing to participate in the study proved challenging. This difficulty may stem from the fact that young adults are particularly concerned with how to incorporate illness into their lives. The lack of incorporation of SCD in their lives may have influenced whether they are connected to support groups or virtual platforms, our primary recruitment source (Jordan et al., 2013).

Conclusion

The work presented here contributes to extant knowledge regarding couples’ experiences in navigating SCD by illustrating how young dyads must simultaneously master standard developmental milestones while constructing a shared framework for managing a complex, relapsing illness. First, findings demonstrate that illness management in young adulthood is inherently relational; partner perspectives directly dictate whether a couple achieves adaptive shared coping or succumbs to protective, rigid caregiving dynamics. Second, integrated healthcare teams and medical family therapists must move beyond routine medical management to actively foster a balance of autonomy and communion within the dyad. Finally, by leveraging a biopsychosocial-spiritual lens, clinicians can equip young couples to transform illness-induced uncertainty into relational resilience, empowering them to cultivate a thriving marriage alongside effective healthcare management.

Appendices

Appendix A

Partner Interview Guide (for partner with SCD)

Introductory/Warm-Up Question:

1. Can you tell me about what it was like dating with SCD?
2. How did you decide when to tell a potential partner that you have SCD?
   a. What was it like sharing this information with them?
3. What was your experience in telling your current partner that you have SCD?
   a. What was their response? How did you feel about the response you received?
   b. How did their response influence the relationship?

Exploration: Illness Meaning and Shared Navigation of Illness in Partnership

1. What is it like to live with SCD?
   a. What are difficulties that you face in living with SCD.
   b. Are there any positives that have come out living with diagnosis? If so what are they?
2. In what way has having SCD affected the way that you:
   a. See yourself?
   b. Look at life?
   c. The way that your partner looks at you?
   d. Vision that you have for the future?
   i. The future of your relationship?
3. What effect has SCD had on your relationship?
   a. What are the difficulties that you face in relationship a result of SCD?
   b. Are there any positives? If so, what are they?
   c. From your perspective do you feel that you and your partner see these effects the same?
4. Do you and your partner talk about the illness and the effect it has had on the relationship?
   a. If yes, what does it look like?
   i. Who starts it?
   ii. How does it go?
   b. If not, why do you think you don’t?
   c. What do you wish you could talk about with your partner, but you don’t?
5. How has SCD effected your ability to maintain closeness and connection?
   a. If not, what do you feel helps your maintain closeness and connection in the face of circumstances brought about by SCD?
6. How does sickle cell disease impact the level of support that you find yourself:
   a. Giving to your partner/spouse?
   b. Receiving from your partner/spouse?
7. How does having SCD impact your conflicts?
   a. What kinds of conflicts are easier to work through? Can you give me an example?
   b. What kinds of conflicts are more difficult to work through? Can you give me an example?
8. Are there any spiritual or religious beliefs that either you or you and your partner share that have been helpful to you as you live life with SCD?
   a. How has or hasn’t these beliefs been helpful the two of you? Can you give me an example?

Wrap Up

9. Is there anything else that you might want to add, or share based on our conversation today?

We have reached the end of the interview. I would just like to thank you again for your participation in the interview today.

Appendix B

Partner Interview Guide

Introductory/Warm-Up Question:

1. How did you and your partner/spouse meet?
2. Can you tell me about learning that they have SCD?
   a. What was your response to them telling you about their diagnosis?
   b. In your opinion how did your partner feel about your response?
   c. Has this response had an impact on the relationship?

Exploration: illness meaning and shared navigation of illness in partnership

3. What is it like to live life with a pater who has SCD?
a. What are difficulties (for you, for them, for the relationship) do the face in living with SCD?
b. Are there any positives (for you, for them, for the relationship) that have come out them living with this diagnosis? If so what are they?

4. In what way has having with SCD affected the way that you:
a. See yourself?
b. Look at life?
c. The way that your partner looks at you?
d. Vision that you have for the future?
i. The future of your relationship?

5. What effect has SCD had on your relationship?
a. What are the difficulties that you face in relationship a result of SCD?
b. Are there any positives? If so, what are they?
c. From your perspective do you feel that you and your partner see these effects the same?

6. Do you and your partner talk about the illness and the effect it has had on the relationship?
a. If yes, what does it look like?
i. Who starts it?
ii. How does it go?
b. If not, why do you think you don’t?
c. What do you wish you could talk about with your partner, but you don’t?

7. Has SCD effected your ability to maintain closeness and connection?
a. If so, how?
b. If not, what do you feels helps your maintain closeness and connection in the face of circumstances brought about by SCD?

8. How does sickle cell disease impact the level of support that you find yourself:
a. Giving to your partner/spouse?
b. Receiving from your partner/spouse?

9. How does having SCD impact your conflicts?
a. What kinds of conflicts are easier to work through? Can you give me an example?
b. What kinds of conflicts are more difficult to work through? Can you give me an example?

10. Are there any spiritual or religious beliefs that either you or you and your partner share that have been helpful to you as you live life with SCD?
a. How has or hasn’t these beliefs been helpful the two of you? Can you give me an example?

Wrap Up

• 11. Is there anything else that you might want to add, or share based on our conversation today?

We have reached the end of the interview. I would just like to thank you again for your participation in the interview today.