I am sitting on my sister’s couch right now. I am in her house all alone. I am sleepy but anxious. I want to be at the hospital with her, yet I want to ball up in a corner by myself. My sister is the strongest person I know. She is a single mother, and she is living with an aggressive chronic disease. Her surgery was considered routine. But nothing is routine with an immune system like my sister’s. I love my sister. I will always be my sister’s keeper – KMW

Selena is a beautiful woman in her early forties. Her sun-kissed skin glows as if she is an inhabitant of a Caribbean island. Her infectious smile brightens the room, and her commitment to her children made me yearn for motherhood. To the outside world she is a strong single mother who has managed to survive a divorce, raise her children and thrive in her career and educational pursuits; nevertheless, she is also a woman living with an invisible disease.1

Lupus is a chronic, autoimmune disease that can damage any part of the body. Unfortunately, it is one of the least recognized diseases and one of the most difficult diseases to diagnose. A healthy immune system fights off foreign bodies, protecting it from viruses such as the flu as well as harmful bacteria and germs. A person living with lupus has a compromised immune system which sees healthy tissues as unhealthy tissues or foreign bodies. The body turns against itself, causing significant harm to a person’s organs and overall health. Those who are lucky manage their lupus flares with medication and life modifications; those who are not die from lupus related complications (Lupus 2016). When a person is living with lupus, everything associated with her health is interconnected. Therefore, when my sister had a surgery that for a healthy immune system was considered routine, her body went haywire, and she was hospitalized because of complications. Since her 2005 diagnosis, my sister has been hospitalized more times than we can count and has experienced lupus flares, which leave her immobile and in extreme pain. This story is all too common for those living with or supporting someone living with lupus.

Emerging from a cultural studies framework, this narrative does not attempt to take a privileged position and serve as the story; instead it is a story based on the standpoint of the storyteller (Frank 1995) and is used to shift an individual experience into a shared experience to increase understanding of this cultural experience (Grossberg 1992; Nicholas 2004). “People tell stories in order to revise their self-understanding” (Frank 2012, 37) and as a means of expressing their illness. In other words, it is empowering for persons to have the resources to tell their own illness story just for the sake of telling their stories (Frank 2012). Stories can also be used as a means of coping with the changes presented throughout the illness experience. These changes are not only reflected in the life of the ill person but also those closest to her, more specifically her children. In Selena’s case, this is evident when she withdraws to hide her physical pain in an attempt to limit her children’s exposure to her illness. When the pain is too great, she depends on her support system to pick up her signals and meet both her needs as well as those of her children (White, Mendoza, White & Bond 2009). This is sometimes a challenge, particularly if signals are misunderstood. The ambiguous nature of the disease leaves little room for traditional loss markers. This pushes my sister and her loved ones into a liminal space creating considerable confusion about the desired type and timing of support and assistance (Boss and Couden 2002).

Nevertheless, the permanence of sibling relationships traditionally allows them to endure challenges, such as the impact of a chronic illness, that are likely to destroy voluntary relationships. Many people learn how to provide support in sibling relationships. Siblings turn to each other to fill companionship, comfort, affection, friendship, and intimacy needs. More specific to this study, women are closer to their siblings than men (Goetting 1986) and are more likely to seek emotional support (Cicirelli 1995). Sisters become closer during adulthood (Bedford 1993; Ross and Milgram 1982) and serve as an increased source of support during periods of loss and times of crisis (Troll 1975).

Method

In this work, relational ethics (Austin 2008) are employed as my sister and I allow the outside world to see into our lived experiences. Relational ethics are particularly important in autoethnographies because by using personal experiences, both the autoethnographer and those related to the experience are implicated. In addition, there are often interpersonal connections between the autoethnographer and other participants; therefore the consideration of relational ethics is essential. Ellis, Adams and Bochner (2011) write that autoethnographers thus consider "relational concerns" as a crucial dimension of inquiry (Ellis 2007, 25; Trahar 2009) that must be kept uppermost in their minds throughout the research and writing process. On many occasions, this obligates autoethnographers to show their work to others implicated in or by their texts, allowing these others to respond, and to acknowledge how these others feel about what is being written about them and allowing them to talk back to how they have been represented in the text.

Through my sister’s stories and mine, I use qualitative inquiry to unpack a critical incident along her journey with lupus. Using collaborative elements of autoethnography and narrative inquiry, I explore sibling social support and chronic illness. Autoethnography is defined as an “autobiographical genre of writing and research that displays multiple layers of consciousness, connecting the personal to the cultural” (Ellis and Bochner 2000, 739). According to Ellis and Bochner (2006); an autoethnographer is “first and foremost a communicator and a storyteller” (111). Therefore, autoethnography uses the telling of stories as a method for obtaining and interpreting data directly linked to the lived experience of the participant, in this case me and my sister. The overt inclusion of personal experience is a unique characteristic of this approach, making it particularly relevant for use when exploring a person’s illness narrative.

Many scholars evaluate the quality of autoethnographies by using a criteria based on Laurel Richardson’s (2000) foundational piece Evaluating Ethnography, which includes substantive contribution, aesthetic merit, reflexivity, impact and expresses a reality. While there is considerable resistance to linking evaluative methods to the practice of autoethnography, I find it an appropriate addition, as these characteristics strengthen the framework of autoethnographic work, contributing to our cultural understanding of the illness experience rather than solely focusing on the physical impact of a disease. The effectiveness of the criteria are measured by the audience’s response to the work such as the ability to connect with research and move toward some change (Ellis, et al. 2011).

Storytelling creates a powerful opportunity to establish a connection between the autoethnographer and the listener as a story never solely belongs to its teller. Frank (2012) asserts that there is value in “hearing how multiple voices find expression within any single voice. A storyteller tells a story that is his or her own, but no story is ever entirely anyone’s own. Stories are composed from fragments of previous stories, artfully rearranged but never original” (35). Narrative as text is used to share my sister’s stories. “Central to the narrative mode is attention to the uniqueness of human storytellers as existential beings, capable of reflecting on their lives and of striving for something” (Sools 2013, 94). This piece expands the body of literature on social support, but more specifically, it creates linkages between sibling social support and chronic illness.

The journey

Living loss

When linked with illness, the term loss most often refers to the end of a life; however, the connection between illness and loss is much broader than this basic framework. Kelly (2008) uses the term, living loss, and asserts that “loss is alive and embodies not only as an emotional but also a corporeal experience that is ongoing and changing” (338). Living loss explains the experiences a chronically ill person (such as Selena) encounter. It also links the socio-cultural framework that organizes the way loss narratives are created, shared and interpreted. Living loss navigates the tension between the socio-cultural framework and the experiences of the individuals affected by loss.

Selena views her experience with lupus as an evolutionary process. Her stories highlight the continuous change she experienced prior to and during her diagnosis. When reflecting on the early signs and symptoms, she felt physical fatigue, achiness and brain fog. In the years leading to her diagnosis, she suffered with increased and more substantial health changes. Looking back, she now recognizes lupus symptoms that she experienced over twenty years ago.

I can trace a lot of symptoms back to 1990 when I was in college and in 1998 when I was in the Army. Headaches, pleurisy (I was rushed to the hospital, felt like a heart attack). When my son was about learning how to ride a bike, I was running behind him holding the bike. Later that day and several days afterwards, I was so sore and felt like I had pulled several muscles. I couldn't understand why it felt like every muscle in every part my body. I couldn't walk or do much of anything and felt like I was out of shape. Fast forward several years, I now realize that I had sent my body into a spinning lupus flare!

Since 2005, she has been diagnosed with Systematic Lupus Erthematosus, Sjogren’s Syndrome and Raynaud’s Disease. In addition, her compromised immune system leaves her vulnerable to infection and extended recuperation periods. However, her evolutionary process is not limited to physical health. In line with the literature on the mental health effects of chronic illness, my sister sometimes lives a life of isolation as she copes with flares and other lupus related challenges. She constantly strives to embrace her new normal yet is overcome at times with feelings of sadness, frustration or anger. In addition, current research supports that clinical depression may be linked to lupus medications (Gallop, Nixon, Swinburn, et al. 2012; Lupus and Depression 2016). Living loss also affects her interpersonal social health, as it forces her to renegotiate the quality of her relationships with friends, family, and others with whom she is in contact. The quantity and quality of one’s social relationships have both long and short-term effects on one’s mental and physical health as well as overall health behavior (Cornwell and Waite 2008). The effects of the disease shift her ability to engage with others as she did prior to her diagnosis. At times she views the disease as baggage that others may not be interested in carrying. For example, she asserts:

Honestly, it has kept me from forming, developing and maintaining relationships. Despite dating and spending time with an individual, the effort and work to keep this going is minimal because in the back of my mind, I wonder if a man would willingly sign-up for the challenges that come with chronic illness. It’s a barrier to being open and honest because of hiding this part of myself.

This passage is also representative of living loss as a reflection of liminality. Turner (1969) describes liminality as a middle space “neither here nor there; they are betwixt and between the positions assigned and arrayed by law, custom, convention, and ceremony” (95). Kelly (2008) writes that liminality can be a troubling experience because “…there is no socio-cultural classification or a medical diagnosis of where “there” is…” (336). The term, which dates to 1884, was introduced to anthropology by Arnold Van Gennep (1909) but did not gain popularity until Turner (1969) borrowed and expanded upon Van Gennep’s work. More recently, scholars describe liminality as a phase in an illness episode and have researched its place in cancer patients (Little, Jordens, Montgomery and Philipson 1998) as well as HIV/AID patients and caregivers (Kelly 2008). Similarly, this research extends the description by connecting liminality, lupus, and living loss.

A person living with lupus functions within a liminal space because as with other chronic illnesses, there is no cure. Lupus is described as a chameleon disease because it manifests itself and can affect those living with the illness in completely different ways. Periods of wellness can last years; however, even during such periods, Selena is very conscious of the choices she makes and how they might affect her health. In other words, even in times of wellness, she lives in liminality. Lupus complications might require a person to change careers, forego having children, or renegotiating her educational goals. The unpredictability of the disease forces many patients to adjust to a slower pace in life. Other patients assert that when they are in remission they accomplish a great deal because they cannot when flares arise (Lowe and McBride-Henry 2012). Over time Selena learned what triggers set off flares and has grown accustomed to avoiding these foods, products or activities.

This unpredictability makes it difficult for Selena to maintain employment or pursue her doctorate degree; thus she finds herself living in limbo. For example, she earned a degree in psychology, served in the Army, completed nursing school, and maintained an active social life. Shortly after beginning her nursing career, she became ill and was later diagnosed. Her immune system was now compromised, and so just a few short months after completing nursing school and beginning her new position, she was pushed into a holding pattern. She later returned to earn a Masters in Counseling and again, began a new career. Yet, the lupus flares also began again, and she could not maintain her client load, so she shifted from full-time to part-time to a medical leave of absence. She began working toward her doctoral degree but found that brain fog limits her ability to concentrate in a rigorous program and again finds herself stuck in a holding pattern--neither here nor there.

Relationship

Selena and I are not only sisters--we are friends. Five years my senior, she helped me navigate my transition from high school to college. She listened intently when I asked her about everything from birth control to sorority life. She never judged me but always told me to be safe and make wise decisions. When she was pregnant with my nephew, she lived in Virginia. I went to stay with her a few weeks before and after his birth. We did a practice drive to the hospital so that I would be prepared to take her. But when her water broke in the Target parking lot, my mind went blank, and I had no idea where I was going. She told me to take her by a friend’s apartment. We had purchased a frozen pizza, and she wanted to eat before she went to the hospital. There, she knelt on the floor and breathed through the contractions. Eventually she gave up on the pizza, and we left for the hospital. A few hours after Myles was born, she asked “Did they eat my pizza?” My sister has a quiet spirit, is slow to anger and will find peace in the most challenging situations. Her ability to thrive and live life purposefully gives me strength when dealing with my own challenges. Although there are any number of incidents (Bitner, Booms, and Mohr 1990) that can articulate the bond sisters share, in the section that follows, I describe one experience as my sister’s caretaker shortly after a routine surgery.

An incident is defined as an observable human activity that is complete enough to allow an event outside the range of normal experience that is sudden, unusual, unexpected, disrupts one’s sense of control, involves the perception of a threat to life and may include elements of physical or emotional loss. Such incidents have the power to overwhelm the coping abilities of an individual. In addition, incidents must make a significant contribution, either positively or negatively, to an event or phenomenon (Bitner, et al. 2011). This critical health incident is reflected by my narrative description of the experience.

*****

Today I finally cried.

I walked in my house and straight up the stairs to run a bath. When I am stressed, overwhelmed or want a break from reality, I run a hot bubble bath, pour a glass of wine, turn on some music and soak it all away. I had just returned home from my extended stay with my sister. Her surgery was the week before spring break. Her couch became my bed. My niece and nephew became my responsibility. I wrote a note to excuse my nephew from school on the day of my sister’s surgery and another note to release him early from school for his orthodontist appointment. I helped my home-schooled niece with most of her school assignments, recruited my nephew to help her with math and tried to remember if she had band or orchestra practice each morning. I drove them to school, church, art class, my parents’ house, and to visit their mom in the hospital. I gained an even higher level of respect for my sister. She did all of this running, maintained a job, and managed a chronic illness –with a smile. After a week, I had stopped combing my hair, wore the same sweat pants three times, and forgot to eat a few meals. Yet as I sat in my tub with tears streaming down my face, I was quickly reminded that running errands and maintaining order was the easy part. The part that causes me such angst, which keeps me awake at night, is this space of liminality. Even though I had returned home to my normal life, my sister was still in the hospital being poked and probed with no answers in sight. I leaned my tablet against the counter, turned on Pandora, and positioned my cell phone screen toward the bathtub just in case my sister called or texted. Everyone else will have to wait.

*****

As I close my eyes, the images from Tuesday morning filled my mind. My sleepy niece sat on the edge of her bed ready for band practice. I walked down the hall to my sister’s room, but she was not there. My heart rate increased as I walked into the dark bathroom. There she sat shaking uncontrollably. Her teeth chattered so badly that I could barely understand her words. Was she having a seizure? Was she having a stroke? I was her caretaker, but I did not know what to do. “Cold. I’m cold,” was all I could understand. I wrapped her in her robe and hugged her tightly. The shaking stopped, but she was exhausted and weak. I have seen my sister in pain many times but never this, never a loss of control. Though I tried to hide it, I was terrified. I helped her back to bed. She breathed deeply and said she would be fine while I took her children to school. I did not want to leave, but I did not want to scare or disrupt their lives anymore than necessary. I picked up her phone and texted a friend. “Can you come over here? The kids have school and an orthodontist appointment. Selena can’t be by herself today. Please call or text me on my phone.”

I convinced myself that she would be fine for the hour I would be gone, and I would find someone to come over when I took the children to their appointments. My niece and nephew get into my car full of energy and chatter. They make jokes about something they watched on television and giggle uncontrollably. I struggle to keep my watery eyes from overflowing onto my face. I rub my eyes, instead of wiping them and adjust my glasses. Perhaps my actions will serve as a manageable disguise. It does not. The car falls silent. They each stare out the window. I drop my niece off at the middle school for band practice. She gets out in silence and shuts the door. I drive my nephew down the street to his high school and manage to ask him if he needed lunch money. I offer a weak smile and tell him to have a good day. I drive back to middle school and wait for Malina to finish her practice. When I am alone, I chat on the phone with my mom and a friend. I express my concern and that I want to take Selena to the hospital. My other line beeps. I answer the call and hear my sister-friend’s voice. “Kesha, Selena isn’t good. I’m on my way to her house but you have the keys, and she can’t get downstairs.” I run through the middle school in a panic searching for the band room. My niece is sitting on the right side of the stage in the clarinet section. I motion for her to leave and mouth emergency to the band teacher. He nods his head, and Malina runs out of the school behind me.

“Is it mommy?” asks my niece.

“Yes, she needs us now,” I responded.

I yell at drivers, red lights, and stop signs as I rush to get back to her house. Malina yells, too. She runs in the house to check on her mom, as I park the car. A few minutes later my brother and a few sister-friends arrive. We get my sister to the hospital and into triage. Her fever is high enough to cause febrile seizures. Exactly a week after a routine surgery, she was back in the hospital with an infection in her body and her blood. The nurses worked for two hours to find a viable vein to insert her IV. With each attempt, Selena’s face wrenches a bit more--eventually she begins to scream. The nurses admit defeat and contact an anesthesiologist who finally starts the IV and begins treatment. I sit in the corner of the room with my sister fielding calls, sending text messages, and answering questions. Through her pain the mother in her does not subside. “The kids need to go to the orthodontist,” she said. I want to cancel the appointment and focus on her, but the mother takes over, and she insists: “They need to go and they can’t be late.” I call my brother in the waiting room; he works it out; they make it to their appointment.

Although we knew the children were deeply concerned about their mother’s health, Selena was determined to keep their lives as normal as possible. It was her attempt to protect her cubs from her illness as much as possible. Her ex-husband had chosen not to be a part of their lives shortly after he and Selena divorced. Myles was a toddler, and Malina was still in diapers, so they were too young to have any memories of their father. They know he is alive, he is in the military, and that their parents were once married. I do my best to be a good aunt, and my parents serve as a constant support. They understand their mom’s illness. They know that sometimes she is very tired and in pain and that sometimes her migraines are so intense they have to leave her bedroom light off and whisper when speaking. But they also know that there is no co-parent to carry the load or to assure them that their mother will yet again pull through this health episode.

They re-admit Selena to the hospital; I sit with her most of the evening then leave to help the children. I walk in the house and tell them to start preparing for bed and to gather everything they needed for the next day. The air is heavy. We are trying to keep moving, but we are stuck in liminality. I want to fix it. I want to make their mother better. I want to take the fear and sadness out of their eyes. I know I cannot; they know I cannot. Her health episodes have concerned me in the past, but they have never scared me. I am scared, and they know it. Instead of talking, we stand in the hallway outside the bathroom, hold hands and pray. I hug them tightly. We go to sleep. The cycle of work for me, school for my niece and nephew, homework, meals, hospital, and bed quickly became routine; but the angst of when will she get better did not. My nephew played video games, my niece sketched in her drawing pad, and I wrote. We each had our way of escaping the uncertainty surrounding her health and what would happen next.

After about two weeks of treatment, procedures that typically worked in forty-eight hours for patients with healthy immune systems but had no positive effect on my sister’s condition, her condition worsened. In addition to the infection and fever, the medicine led to rashes covering her entire body and sores inside her mouth and on her lips. Her medical team is baffled. She is a medical anomaly. It seems that their training in specialized areas has left them incapable of looking at the holistic picture. She is a woman living with an invisible disease that affects her body in ways her medical team cannot seem to understand. Infection specialists and her primary physicians battle over treatments while Selena sits in limbo. Against her primary physicians’ suggestions, she sides with the infection specialists and electes to undergo a second major surgery. In recovery, her physician tells her they opened her up but did not find anything. The physician admits that it was likely a lupus flare and had passed on its own, implying that the second surgery was unnecessary--but who really knows with this chameleon disease? The recovery from two major abdominal surgeries in under a month is lengthy to say the least. It appears that this incident is nearing its end, and my sister will yet again pull through this health episode and return to normalcy. The challenge of chronic illness is that it is chronic--it does not go away. It hides, it lurks, it rests; but it is still there teetering on the edge--leaving my sister and her support system in a space of liminality--neither here nor there.

*****

A sister is a forever friend –Author Unknown

Although our sibling relationship is involuntary, our friendship is voluntary. My sister is one of my closest and most trusted friends. The relationship we share includes a blending of characteristics found in both sibling relationships and friendships. Literature supports that except in cases of death, sibling relationships usually last longer than any other relationship a person experiences. When I reflect on my lived experiences, my sister is always present--from my first steps to my wedding day. As a child she was my guide, and I was her shadow. We learned early in life that sisters looked after each other and were concerned about each other’s well-being. As adults, our supportive behaviors extend beyond family obligations. While I must admit I often feel helpless in this liminal space, our random phone conversations and late night sessions of text messaging foster a deeper level of connectivity in our relationship. Our expression of social support is built upon a lifetime of love and commitment.

Friends may come and go, but my sister will always be my sister. In 2005 when she diagnosed with a disease that I knew nothing about, I began to ask her questions and search online for additional clarity. Instead of becoming burdened by her diagnosis, my sister became an advocate. She handed out lupus bracelets and pins, discussing the disease among friends and family. I was honored to be in the audience when she was featured in “Portraits of Hope for Lupus: A Traveling Exhibit for Lupus Awareness.” I was honored to stand with her as her portrait was formally introduced. My sister’s loss narratives suggest that living with a chronic illness can be a lonely place. The effects of lupus have forced her to renegotiate her life script and adjust to living in liminality. There is no such thing as a normal day because even during periods of wellness, she is cognizant of the never-ending liminality. Since her diagnosis, I have learned how to support Selena during times of illness. In some instances that means texting instead of calling her, or when I am in town, washing dishes, folding laundry, or dropping of my niece and nephew wherever they need to be. In other instances it may be listening to her stories, affirming that her frustrations are legitimate, and that although I cannot take it away--I am here with her in this middle place.

Endnotes

1An invisible disease is a disease that is not physically visible or easily recognizable to an onlooker.