Identity Shifts Throughout HCT: A Holistic Approach to Patient, Caregiver Support

Patients undergoing hematopoietic cell transplant (HCT), their caregivers, and family members often experience dramatic shifts in their identity during and after the transplant process.¹ These shifts can cause significant disruption in their lives, even among the most stable family and friend units. With holistic guidance and informed, empathetic care from professionals on healthcare teams, these patients and their support persons can better cope with the identity-related challenges they face.^1,2

Tangible shifts

Identity is defined as how people connect with and relate to others.¹ Identity affects behavior and actions. External identity is how a person presents to the world. This can involve profession, activities, hobbies, and role in a family unit. Internal identity is inward, ie, a person’s self-esteem, values, faith, and religious affiliation. 

Patients and caregivers can have both tangible and intangible identity shifts. Tangible, or external, shifts include those that are observable by others: hair loss, weight gain or loss, steroid-induced manifestations, and skin and nail changes.¹ 

Patients undergoing HCT often grapple with a profound sense of disconnection from their own bodies due to these tangible changes: 

“I don’t recognize myself or my body.” 

“This isn’t me.” 

Tangible shifts encompass functional changes in health status and physical abilities: mobility limited from severe muscle weakness or acute pain; inability to perform daily tasks due to loss of stamina, exhaustion, or deconditioning.¹ 

Tangible shifts in identity can be acute (such as hair loss or weight change) or chronic (such as graft-versus-host disease [GVHD]) or inability to maintain a healthy weight due to gastrointestinal GVHD effects.¹ These changes are stark and unavoidable reminders of the transformative impacts of HCT. 

These changes do not necessarily commence on the day of transplant. The intensity of the conditioning regimen before transplant can cause physical and functional changes. The effects of this intense treatment can make patients feel betrayed by their own bodies, even when the changes are temporary. When the changes are more permanent, such as loss of fertility, coping is understandably more difficult.

Intangible shifts

Besides the tangible changes, patients undergoing transplant experience intangible shifts in identity. This can be a loss of sense of self or self-worth, such as when a person becomes medicalized.² Picture a formerly healthy, active person who becomes a patient — a number on a wristband. 

Every time they interact with a member of the care team, they must repeat their name, date of birth, and medical record number. They may have formerly identified as a parent, adult child, athlete, employee, neighbor. Now they may see themselves as — and are constantly reminded that they are — a sick person, a burden to others, and necessarily single-focused on their illness. 

The impact of this loss of identity is even greater for patients who have relocated away from home for transplant. Home is where most people feel safe and most like themselves. Being away from home and in a medical or medical-adjacent setting for a prolonged time can contribute to loss of identity.¹ 

It’s easy to see how the person inside can fade away: 

“I went from being someone others could depend on to being completely dependent on others. I had to let my wife take over making every decision, including my medical decisions.”

Care team members can help by emphasizing the importance of paying attention to the other aspects of identity that may be overlooked in the lengthy admission process during transplant.² Engaging the patient in talking about other parts of their identity — family, home, community — is an effective way to recognize the whole person. This engagement tactic is valuable for both patients and caregivers.² 

Intangible shifts in identity can lead patients to re-evaluate their goals and priorities. Spiritual views may be challenged as they navigate the transplant experience: 

“What did I do to deserve this?” 

Social workers, spiritual care, and chaplaincy staff can work with patients and caregivers to offer support and opportunities to engage safely in religious practices and reframe priorities and values in the new reality of their lives. 

Shifts in emotional identity, which may be acute in the early stages of the transplant process, can include feelings of anxiety, hopelessness, and unease: 

“What can I expect in this process?” 

“Will I ever feel better?” 

“Will I be cured?” 

After transplant, those feelings may persist, shifting to a pervasive fear of relapse. Patients may feel alone and isolated. 

Adult patients may need to rely on their older parents for support, causing patients to feel a return to childhood relationships with parents and causing parents to fear their children may predecease them. When parents of minor children are the patients, they may feel guilty for not being able to be there for their children in the way they were before transplant, and children may have a sense of abandonment. 

Patients’ friendships may be affected due to reduced ability to socialize, lack of energy and capacity, and being immunocompromised or hospitalized. Friends may not know what to say or do and may stay away, leaving patients to feel out of the loop and question the strength and importance of friendships. Patients may retreat and self-isolate out of necessity or hurt feelings. 

The emotional effects of identify shifts can wreak havoc on patients’ well-being.³ Anxiety and grief can lead to wondering, “Who am I after transplant? Will I be able to work? Return to my former activities? Plan for my future?”

Relationship shifts

In most cases, patients aren’t alone in these experiences. Their caregivers and other loved ones — parents, children, friends — experience shifts in identity. The shifts change relationships, compounding identity confusion.¹ 

As patients become increasingly reliant on caregiver-partners for care coordination, activities of daily living, transportation, and emotional support, and understandably have less to offer emotionally and physically, caregivers often feel alone and overburdened. They may resent the increased responsibility they must assume and see their partnerships transition to patient and caregiver where they’re the lead decision-maker about home and family, safety and well-being, and carrier of a greater emotional burden. Caregivers may have less time for social engagement with friends and feel isolated and frustrated, with their worlds getting smaller and smaller.

Despite these shifts, caregivers must provide emotional reassurance, noticing their loved ones’ tangible changes and offering reassurance that what’s inside hasn’t changed, without getting emotional support in return. Caregivers are tasked with reporting changes in patients’ status to the healthcare team, putting them in the position of reporter and source of truth. It’s not unusual for caregivers to feel helpless in the face of intense physical changes in their loved ones.

Like patients, caregivers may feel hesitant to plan, always waiting for the other shoe to drop. One bad test result can return them to the caregiving role. 

Both sides

Both patients and caregivers can feel as if they’re in a suspended state of identity and uncertainty, a limbo between before and after transplant. As one patient said: 

“I felt like we were so lucky before my husband got ill. We had everything going for us, and our lives took a shocking turn in a moment. I didn’t want to be in charge but had to be. I had to be willing to push, irritate, and question the care team to advocate for my husband. I lost my anchor because he was ill. Some days I wondered if I’d ever have him back as a true and equal partner. I learned to accept help from others, and I gained competence and independence in the process. I handled the challenges and setbacks and now appreciate what we have while we have it. We leaned on a psychotherapist we had a relationship with before the illness.”

In addition to the emotional impact of suspended identity, patients and caregivers can experience ambiguous loss and disenfranchised grief. Ambiguous loss lacks closure or clarity, with uncertainty about the status or meaning of the loss.⁴ Disenfranchised grief occurs when grief isn’t acknowledged or validated by society or the support network.⁵ Both types of grief have an emotional toll on patients and caregivers. 

The sense of loss may center on prior functional status or roles, things not being the same as they once were: 

“I’d been outdoorsy and could no longer do the things I loved posttransplant, and I had a lot of grief over that. Years after transplant, I still am anxious and cautious about my physical well-being. Despite that, I’ve mostly accepted my new self-image. I’m closer to my wife and kids now and more empathetic to people who have serious illness.” 

Both patients and caregivers can find newfound resilience and pride in navigating the transplant and treatment journey. They also can experience greater appreciation for everyday life, having faced mortality. Caregivers can find new purpose in caring for their loved one through illness, treatment, and transplant.³ 

To help break down the treatment barriers that patients and caregivers face, the care team must offer personalized and confidential support and education in navigating the treatment journey. Having a dedicated care team can assist patients in receiving tailored information and support before, during, and after transplant. Answering questions related to the donor search process, financial assistance, coping strategies, preparing for life after transplant, and addressing the specific needs of both the patient and their caregivers is vital for success.²

It’s necessary for members of the care team to help patients and caregivers identify and process all these emotions, validating the feelings so they can move forward.² This can include allowing time during appointments for discussion, listening empathetically, and normalizing the experience and emotional expression. The care team can provide psychoeducation about identity changes and guide patients and caregivers toward concrete referrals, including peer support and individual therapy. 

A caregiver said, “One of my husband’s physicians told us, ‘This is a barge, not a speedboat. The process is slow.’ That was a good reminder, but sometimes progress seemed impossibly slow.” 

Holistic, empathetic care teams hold patients and caregivers throughout the duration of transplant and beyond to ensure they feel heard, valued, and supported during the journey — no matter how slow it is.

Author Bio

Katie Schoeppner is director of Patient Services, Leah Christianson is Patient Services Manager, Hailey Hassel is senior social worker, and Cortney Alleyne is BMT Patient Navigator, all at National Marrow Donor Program in Minneapolis, Minnesota.