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Key points
- Illness identity is the degree to which a health condition is integrated into someone’s identity.
- Illness identity is comprised of four constructs beginning with engulfment, which can mean completely defining oneself in terms of the illness.
- The concept of cancer identity is gaining traction as more people are living with cancer as a chronic illness.
In September 2005, I’d experienced intense back pain and went to my doctor for what Google and I thought was a kidney infection. A bottle of antibiotics and I’d be fine. Twenty minutes later, I was diagnosed with stage 4 lymphoma. My life lay on the chopping block.
With too much intensity, my doctor said, “Get to the hospital. Now.”
My blood counts were so low that either a heart attack or a brain aneurysm was imminent. An orderly in blue hospital scrubs waited with a wheelchair. I was irritated, not at her but at this whole insane situation. I refused the seat she kindly offered.
I followed her through the colorless hallways where phones rang quietly and people moved with purpose across the gleaming linoleum. Over the ambient hospital noise, I could make out the orderly softly whistling, “Fly Me to the Moon.” She showed me to a private room. A faded cotton hospital gown—the iconic garment of all who are sick—lay folded across the end of the bed. I thought, “Do I have to wear that?”
In the gown, I felt vulnerable and weak, changed from the woman I am—who tries to be kind; who has good taste, or thinks she does; who doesn’t eat meat; who reads a lot; drinks a little too much; and wishes she weren’t so ambivalent about sex; that woman with those attributes and many more—into a medical record number, lab values, a diagnosis, and a course of treatment. The gown has nothing to do with me. In just minutes, the hospital had already begun to steal my identity. At home, I’d be lighting candles on the dining room table and pouring myself a glass of Sauvignon Blanc.
Defining illness identity
The published literature defines illness identity as the degree to which a chronic health condition is integrated into someone’s identity. Illness identity not only expresses how a person views their disease and the required treatment, but also how much the disease affects the way they think about themselves and the degree to which the illness becomes integrated into their sense of self.
Illness identity comprises four constructs: engulfment, rejection, acceptance, and enrichment.1
Here is the description of my journey through all four stages of the illness identity constructs.
Engulfment
The first construct—engulfment—refers to the degree to which the illness dominates the patient’s identity and daily life. High engulfment scores are observed in patients who completely define themselves in terms of their illness.
Engulfment is a perfect word here. I was engulfed, overwhelmed, and dominated by disease. Given my unexpected and almost immediate diagnosis, this is an entirely understandable response. I would eventually journey through all four illness identity constructs.
Rejection
Rejection—the second construct—refers to the degree to which the illness is rejected as part of the patient's identity and is seen as a threat or as unacceptable to the self. Patients with high rejection scores tend to neglect their illness, resulting in suboptimal self‐management and adherence.
Engulfment and rejection are less adaptive forms of illness integration. At diagnosis, I was not at the point where I could reject what I couldn’t understand, accept, or control.
After three days of around-the-clock blood transfusions, it was decided I could go home. When I was released from the hospital with a definite diagnosis, mantle cell lymphoma, I was in a much better psychological state to reject what I still couldn’t accept. My oncologist had told me that my stage 4 lymphoma was distant spread and to stay away from the computer. What a joke. Here is my rejection in action.
I knew stage 4 cancer was the last stop before death, but I’d not heard of distant spread. I turned on my computer.
F-ing Google Hell.
I re-read the paragraph. To paraphrase: In distant spread malignancies, cancerous cells from lymph nodes spread through the bloodstream to almost any part of the body where they then set up their murderous (my adjective) colonies.
No. My body cannot be gorged with cancer cells. This drivel does not apply to me. It pisses me off. My hip is sore from the bone marrow biopsy, but the intense back pain from two days ago is hardly there. If that pain was caused by a tumor pressing on my spine, how can it be gone now? Somebody’s made a whopper of a mistake.
I firmly and greedily embraced rejection.
Acceptance
The next construct—acceptance—is the degree to which patients accept their illness as part of their identity and integrate it with their other social roles. Acceptance is finding a balance between illness and living life.
I did get to this point in my cancer journey. It came months later, after my stem cell transplant at Stanford Medical Center. Acceptance looked like this.
While the bone marrow donated to me by my brother did the heavy lifting, my husband drove me daily to Stanford. All of us respirator-wearing transplant patients are accompanied by a caregiver. We cannot travel alone. Waiting in the reception area, I wonder how the other patients look without the masks—what they do, where they live. Who would make it, and who wouldn’t? The clinic reception area has an atmosphere of privacy or shame—like a therapist’s office or an electrolysis suite—and doesn’t invite conversation any more than the respirators do. Friendships are not forged in the waiting room—even the caregivers rarely converse. We are resigned, even accepting, and wait to move forward, to no longer be defined by our cancers.
Enrichment
The final construct—enrichment—refers to the degree to which a patient's illness results in positive life changes, enriches a patient's sense of self, and enables one to grow as a person. These latter two states represent more adaptive forms of illness integration into one's identity.
I readily admit that my cancer journey resulted in many psychological and spiritual gifts I would have never anticipated and for which I am deeply grateful.
Negotiating illness identity
When patients are diagnosed with cancer, they begin to negotiate their illness identity in relation to their past and future selves, their relationships, and their group memberships. Thus, how patients view their cancer in relation to their other identities may affect how and why they make particular decisions about treatment options. Practical implications include how health care providers and family members can support patient decision-making through awareness of and accommodation to identity shifts.2
The concept of cancer identity is gaining attention as more people are living with cancer as a chronic illness. Research suggests that self-identity as a “cancer patient,” rather than a “cancer survivor,” is associated with depression, lower health-related quality of life (HRQL), and higher health care use within the 12 months of study duration. A significant percentage of the 6,057 respondents in this study, still considered themselves as “patients” five to 15 years postdiagnosis.3
While I know that my lymphoma might come back after 16 years as a survivor, I am as far away from being a cancer patient today as I was before I was diagnosed. Enrichment is such a great frame of mind.
Lastly, some research claims that—on an organizational level—healthcare is suffering from a patient identity crisis. Evidence on how to cure this problem is now available. Every hospital wants to improve the health and outcomes of their patients as well as the health of their business. By understanding and improving the patient identity process, significant gains in patient safety, revenue cycle efficiency, and market share are possible.4
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