#illness narrative

[undiagnosedanonymous-blog]

Illness Narrative Summary (Part I)

Welcome to Part I: The Mystifying Mononucleosis

I can’t say for sure how long ago illness began—5 or 6 years—as this is a difficult judgment to make without a diagnostic lens through which to interpret my symptoms, but I’ll begin at 6 years ago.

Roughly 6 years ago, just around July 4th weekend, I became ill with infectious mononucleosis as confirmed by EBV antibody testing.

Within the year that followed after recovering, I began experiencing a handful of symptoms about which, during this time, I was mostly unconcerned and to which I didn’t really give second thought.

My symptoms included fatigue; nausea; hot flashes; night sweats; infrequent episodes of waking up unable to breathe; significant hair loss in the shower; loss of interest and pleasure in doing things I normally enjoyed, leading to a chronic state of boredom; and decreased libido.

Figure 1. Hair loss.

While I did acknowledge that these symptoms were not normal, they did not impair my daily functioning nor lead to personal distress, until the decreased libido, as it was creating problems in my relationship and therefore significant personal distress and guilt. So, I sought the advice of my new gynecologist, as many of these symptoms seemed to have a hormonal “feel” to them.

My gynecologist told me that my symptoms were related to depression from endometriosis, with which I had already been clinically diagnosed. She also said that hormone testing was not possible as I was on the birth control pill, which would alter my hormone levels. I left the appointment with no answers and no options.

Had I not been in a relationship at the time, I don’t know that I would have continued to pursue my symptoms any further since the loss of libido was the only way in which any of these symptoms were interfering with my life and causing distress, as I was constantly worried and felt guilty about my lack of desire.

I took to researching my symptoms online to see if any websites would be more help than my completely unhelpful gynecologist. At some point I stumbled across low testosterone among females who are long-time users of the birth control pill. And, after about a month of research and deliberation, that following March, I took myself off the birth control pill for the first time since starting it about 10 years prior. I needed to do something, and I didn’t know what else I could do.

Bad idea. I had no idea that all that I had been experiencing that year prior would be the very least of my worries.

Sincerely,

[undiagnosedanonymous-blog]

Illness Narrative Summary (Part II)

Welcome to Part II: Something’s Definitely Not Right

At the end of August, I moved to a new geographic location to start a PhD program. By this time, I’d been having increasing frequency and severity of endometriosis symptoms, as I’d been off the birth control pill now for 3.5 months. To me, pain was just pain, and I was insistent on pushing through. But I didn’t know. I didn’t know what would happen next.

Throughout the next 3 months, I became completely inundated with a whole host of new symptoms that did not appear to me to be related to my presumed endometriosis diagnosis.

It was during an acute storm of mostly new symptoms on September 12th that I wholeheartedly (and broken-heartedly) knew that something was genuinely wrong with me. This storm of symptoms included difficulty focusing my eyes, which led to a general feeling of dizziness; lightheadedness; hot flashes; depersonalization/derealization; and significant trouble with recall; the last of which persisted for (but lessened up over) the next 3 days.

September 2014

Throughout the rest of the month began other new symptoms, which included light sensitivity, impaired concentration, confusion/extremely slow recall of time and place, impaired balance, dyslexia, rapid mood changes characterized by sudden and severe depression, complete loss of appetite, and weight loss. Furthermore, the episodes of nausea and hot flashes that had begun the year prior became much more frequent and severe.

October/November 2014

Throughout October and November began yet other new symptoms, which included malaise, muscle weakness/stiffness/pain, neck ache, headache, ear pain, joint pain, low-grade fever, swollen lymph nodes, sore throat, hoarseness, insomnia, panic attacks, hyperexcitability, disinhibition, pressured speech, and feelings of grandiosity. I also noticed that I was peeing more frequently, though this was usually confined to the nighttime during which I would wake up 3 times on average per night to pee. Furthermore, the fatigue, night sweats, and sleep apnea that had began the year prior became more frequent and severe, and the diarrhea, constipation, and lower back pain that appeared associated with my presumed endometriosis diagnosis and that had began soon after going off the birth control pill in March were also more frequent and intense. 

December 2014

By mid-to-late December, my symptoms had hit a plateau, and had even somewhat lessened up a bit, though they were still very much present. However, I developed 2 additional, somewhat unique, symptoms: widespread noncontact bruising on my legs and an enlarged, scalloped tongue with bouts of slurred speech.

Figure 1. Left leg bruising.

Figure 2. Right leg bruising.

So, during this 3-month period, not only did I experience a serious onslaught of new and terrifying symptoms, but the ones that had began roughly a year before--after my experience with mono--became significantly worse. I think the only thing that did not worsen during this time was the hair loss in the shower.

Sincerely,

[shrinkrants]

Between the discourses of illness experience and institutional medicine, a mediating discourse has emerged during [the] past couple of decades, expressed in various pink-ribbon movements, . . . . The core narrative [of these movements] is that "the cure" will result from a conjunction of mass participation and medical research. Participation in an organized event is the bodily enactment of this narrative. Popular journalism, systematic research, and my own ethnographic experience underscore how disciplinary these events are. Participants are required to recognize themselves as the subjects of at least three truths: the truth of mass participation as public witness to cancer's pervasive effects, the truth of medical research that events fund and publicize, and the truth of corporate sponsorship that is ubiquitous in the events. Each truth is specifically named--the number of participants is acclaimed, amounts of research funding are specified, and sponsors are thanked; frequent applause and cheering are expected. In the staging of the events, these truths are mutually implicated; the telos of "the cure' comprises all three.

Arthur W Frank in From sick role to narrative subject: An analytic memoir, Health 1-13, DOI: 10.1177/1363459315615395

[thewombless-refugee]

Mission Statement

I plan to investigate the importance of narrative to understanding the societal implications of infertility as a modern woman and its value to a more holistic understanding of the condition of infertility. The goal of these posts is to make the topic relevant for a larger audience of people who do not have access to medical journals. It will also help in filling in the gaps that the word “infertility” leaves in the lives of women who are infertile and the lives of their families. I hope that with these blogs I am able to reach a wide variety of people who are interested in learning about infertility as well as those who are suffering from it themselves. The experience of Eman doesn’t reflect the experience of all women, but I hope that these entries and ideological tangents that were a result of her journey can make a difference in the world of gynecology and how the public views infertility, while also bringing up important discussions that shed light on an uncomfortable and painful topic. <p> </p>

I chose to write this narrative because I find that the condition of infertility is at a turning point in medicalization in our society. Often, the worth of women is based upon their value as a sexual object and in reproduction; I am interested in deconstructing this and reconstructing it in a very raw and honest way on this blog. <p> </p>

Through this process I am constructing "entries". Each entry represents a topic that Eman asked me to promise to include in my examination of modern infertility in her life. They are derived from her ideas and are intended to spark discussion. The breakdown of each blog is first, a central idea or blog entry that may look a lot like a diary entry. These are based on our interview as well as written materials that she shared with me during the interview. Secondly, there are relevant quotes and sections form our 4 hour interview that I found to tie beautifully into the main entries. These quotes were a vital part of what I used to construct her narrative. Any time you see the word “I”, it refers to Eman, and not me as the author.

[shrinkrants]

. . . the physician’s duty is not to stave off death or return patients to their old lives, but to take into our arms a patient and family whose lives have disintegrated and work until they can stand back up and face, and make sense of, their own existence.

Paul Kalanithi, When Breath Becomes Air

kindle location 1629

[illnessnarratives]

When I was 13, my mother was diagnosed with breast cancer.

My parents had just come to pick me up from camp, and I was in the car, on my way into sleep, when my mother spoke up.

"I’m sick," she said, "I have cancer."

It wasn’t an earth-shattering moment for me, like it is for some people. It just didn’t seem real. And that was all my mother said about it, the rest of the four hour trip home. It wasn’t until a few weeks later, when my mother went into surgery to have her tumor removed and I visited her in the hospital, that it even sunk in at all.

My mother had cancer.

I started middle school. My mother started chemotherapy. Sometimes I would come home to an empty house, and turn on all the lights. Sometimes I would come home and my mother would be there, napping upstairs, my father working quietly from his laptop at home.

She was very careful to hide it from me, I think. There were some things that couldn’t be hidden, of course—my mother lost all her hair, and she was slower, sleepier, tireder. But if she complained, if there were any ugly moments—and there must have been—I was never there for them, not because I didn’t want to be, but because she never showed the pain in front of me. There was a sort of independent strength to my mother that I hadn’t seen until then—a determination not to burden me, my father—even my grandmother, her own mother, who to this day my mother never told about her cancer.

She said something to me, once, a couple of weeks into the chemo, that has stuck with me ever since.

"I’m going to get better," she said, "I’m going to watch you grow up and I’m going to watch you walk down the aisle and get married. I’m going to get better. It’s going to be alright. I’m not going to die."

I cried, then, like I hadn’t when she had first told me or when I had seen her in the hospital or when she began to lose her hair. I cried because I was relieved, because I was afraid, because I didn’t know how to make sense of any of this or how to help my mother. I cried because I didn’t want to admit that I had been afraid of exactly that outcome—losing her—and she had known anyways.

[shrinkrants]

"According to Frank, the modern experience of illness is substantively different from the postmodern experience of illness. Frank identifies Talcott Parsons as the preeminent theorist of the modern experience of illness, an experience characterized by the patient’s assumption of what Parsons identified as the ‘sick role,’ which required an absolute surrender to the care of a physician and the institutional structures of medicine. Partly because  of the shift in the twentieth century from acute to chronic illnesses (thanks, of course, in no small part to the successes of modern medicine), the experience of illness has shifted as well. Formerly patients generally either got better or died; now, however, patients are often neither fully cured of nor dead from their illnesses, but, rather are in and out of remission. The body remains haunted by illness and its threat; the person is neither fully healthy nor precisely ill; they are somewhere in between. Frank maintains that in postmodern times there are many people, including himself, who occupy this liminal position between health and illness: thus, in the late-twentieth-century West, we live in what Frank calls a ‘remission society.’ In a ‘remission society’ the boundaries between health and illness are permanently disrupted, thereby challenging the dichotomous formulation of health as the norm and illness as that which deviates from the norm.”

- Lisa Diedrich, Treatments: Language, politics, and the culture of illness. p 3

[intrainingdoc]

A patient makes contributing writer Anjani Amladi from The Commonwealth Medical College remember her own illness experience in "When a Patient’s Disease Strikes a Chord."

Although we all have had experiences with illness, this does not mean we can't be caught off guard when a disease we are too familiar with manifests in one of our patients. This article describes my experience with a patient from the perspective of a cancer survivor, and how the very same disease I battled struck a chord when it appeared in one of my young patients.