Posts Tagged 'Lupus'

PFAM: The Patients (and Impatients?) Have Spoken

Green and white rectangular badge. On top, "Patients" is written in all capital letters, in Times New Roman font in white on a kelly-green background. Below, on a white background, "for a moment" is written in green, slanted up from lower left to upper right, in a more casual, slightly scrawled font.

For this edition of the Patients for a Moment (PFAM) blog carnival, I posed a question that gets to the heart of the carnival itself: its name. “Are you a patient?” I asked. “Which word(s) do you use to define yourself, and why?”

What intrigued me most about the bloggers’ responses was the combination of differences and similarities among them. Several took a contemplative turn, consulting dictionaries, teasing out complex meanings from the root of the word as well as its modern usage. Others jumped in with a more visceral and emotional response. Several take the reader on a journey, trying on a series of identities to determine which words fit and which don’t.

The overlap was as striking as the divergence. Each post contained a surprise. Sometimes it was the mood and tone, sometimes it was the interpretation of the question. Sometimes it was the ultimate answer at which the blogger arrived. I was surprised by how evenly split the answer was: four end up answering yes, they are patients, and three that they are not. However, everyone felt some pull in more than one direction. Internal conflict was a theme for most posts.

Wendy of Picnic with Ants grounded her post, Am I a Patient? in the definition(s) of the word, patient, before taking off on a flight of musings on diverse aspects of her identity. One section I found particularly sweet, funny, and revelatory was how her relationship with her husband has been affected by her illness, and how that relationship affects her identity:

I had a lot of trouble with my husband being my caregiver for a while.  I felt like I was no longer his wife, I was his patient. . . . Many times he’s held my head and calmed me when I had vertigo for hours and just kept throwing up.  He’s put in many suppositories, and every time I feel horrible about it, and I cry.  I often feel like we’ve changed, I’m now his patient.  But I’m more than that…

A family member also affected Genevieve’s perspective on thinking of herself as a patient. This blogger at Gonna Eat Worms grew up hearing the word “patient” in a very neutral, even positive, context because her father was a family doctor. Using gently self-mocking humor, in Becoming More Patient, Genevieve ponders whether this is the source of her comfort with the word, patient, or whether it is part of her healthy denial about her chronic condition:

Words are like little signposts with secret, private perceptions hanging on them; they never mean exactly the same thing to any two people and I have to be honest and admit that “patient” is not a trigger word or a sensitive word to me at all.

Rachel of Tales of Rachel also looks at her life from many angles before coming to a conclusion. Her post, The Patient, feels like a poem. In a few short, evocative, flowing lines, she lets us in and then makes her leap. I don’t want to quote an excerpt here because I think this post is like a delicious, ripe berry — it is best enjoyed fresh and whole, in one mouthful.

Megan of Objects in Mirror are Closer than They Appear also used the dictionary as her jumping-off-point for her post, Am I (a) patient? Her rich and layered examination of the subject from a linguistic, political, and personal perspective was a joy to read:

While I’m sure this kind of verbal gymnastics seems either basic or unnecessarily complicated to some people, it prevents us from reducing an individual into his or her most prominent—or visible—identity category.

Many bloggers indicated that this topic hit a nerve for them. (Wendy admitted she “stepped outside her comfort zone.”) For the remaining three bloggers, the nerve seems to have vibrated against being labeled as a patient.

Connie Rae posted here at After Gadget as a guest blogger. She interpreted the question in a way I never would have thought of. Her post, The Importance of Healing Language, focuses on the difference between a traditional Western medical perspective on health and healing, and the route she has taken to heal from back injury and chemical injury. Her preferred practitioners don’t even use the word, patient:

Many alternative practitioners call those they treat, “clients.” They give you a wellness plan and most clients don’t wait very long in the “reception” room (instead of “waiting room”). You also usually go in with pain and come out with a smile.

Phylor of Phylor’s Blog: chronic pain, life, and all that, says my question fueled “a rant” that she turns into “a call to arms.” I found the latter phrase to be more accurate in doing justice to the depth and passion of her post, When Am I a Patient? Phylor unleashes an energetic and invigorating honesty that defines patienthood as being tied to a loss of respect and control as a “chronic”:

We aren’t cranks, hypochondriacs, drug-seekers, or drama queens. We are people who have often at costs to our physical, spiritual, and emotional health tried to come to terms with our chronicness, be informed of the latest trends/discovers, and ask all the right questions.

Last is my own piece, carrying this ridiculously long title: What’s in a Name? Lymie, yes. Canary, yes, CFIDSer, yes. Patient no. I describe how I came to embrace and enjoy this carnival when I decided to share my discomfort with its name:

Given how often PFAM occurs, how much I enjoy blog carnivals, and the fact that PFAM is a chronic illness carnival, I thought to myself, “What is holding me back from getting more involved with this community?” The reason was staring me in the face: I don’t identify myself as a “patient.”

Thanks so much to the wonderful bloggers who contributed their time, energy, and brain cells to this very thought-provoking edition of PFAM. I enjoyed each piece. And thanks to you, the readers, without whom there wouldn’t be much point in posting! Please visit the links above and give these excellent bloggers some love in the comments.

The next issue of PFAM will be hosted by Sick Momma. Maybe I’ll see you there!

– Sharon, the muse of Gadget, and Barnum, SDiT


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