The Patients for a Moment (PFAM) blog carnival goes up this Wednesday (gulp — tomorrow!). This was my call for entries. The submissions so far have been fascinating. You can look forward to a great carnival!
The “P” Word
Meanwhile, here is my post on the topic I picked (and why I picked it).
PFAM — which has been occurring twice a month for over two years — was my introduction to blog carnivals. The first time I saw the term, “blog carnival,” was in a call for submissions for PFAM. I immediately found out what a blog carnival was and determined to get involved in PFAM. I have written posts for PFAM a couple of times, but I didn’t contribute nearly as often as I’d intended, and until now, I never volunteered to host. This is in contrast to the disability blog carnival, the ChronicBabe carnival, and especially the Assistance Dog Blog Carnival, the latter of which I founded.
Some of my difficulty with PFAM definitely stems from its structure — the tight deadlines* and the requirement of answering a specific question don’t gel well with my physical and cognitive limitations. However, 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.”
“Patients” isn’t just the first word of PFAM, it’s also central to its purpose (quoting the carnival’s “about” page):
Patients For A Moment is a patient-centered blog carnival – for, by, or about patients. . . . The goal of the carnival is to “build connections within the community of people who blog about illness, disease, and disability. This includes doctors, nurses, caregivers, even policy wonks – but especially patients.”
The actual goals and membership of the carnival are quite sympatico with my interests — “build[ing] connections within the community of people who blog about illness, disease, and disability” — and I am familiar with several of PFAM’s contributors. But I couldn’t see my way clear to hosting the carnival unless my topic was to question the use of the term, “patient,” itself.
Some might find my focus on that single word, “patient,” to be nitpicking. Yes, I’m a writer. Yes, words are important to me, but my feelings about being called a “patient” go beyond semantics. I have a visceral reaction, bordering on revulsion, at hearing myself described this way.
To me, the only accurate or appropriate use of “patient” is situational. It is either relational — the person who is one half of the doctor-patient dyad — or it is locational — the person who is in a medical environment (usually a hospital) — receiving care, undergoing tests, or consulting specialists.
However, just as often as I read or hear “patient” used in one of these appropriate contexts, I also see it used as a generic term for a person with a chronic illness, condition, or disability. How I react to this usage is determined by who is using it, and how. Specifically, it makes a difference to me if it’s a mainstream/”nondisabled” person or form of media using it, versus when someone with the disability in question is using it about themselves.
When the Nondisabled World Calls Me a “Patient”
My reaction to nondisabled/healthy people referring to me as a patient is relatively clear-cut. I don’t like it. Almost every magazine, newspaper, or TV program referring to someone with a chronic illness will refer to them as “patients” — if we’re lucky. Usually, along with references to patients, we are also “struck with,” “afflicted with,” or “the victim of” our disease. That last one really highlights the problem with this kind of language: to be a victim means to have been attacked and helpless, as if the disease has some sort of malicious intent, and we have lost all power and control. Such language supports a perception of people with disabling chronic illnesses as pathetic and different. We are not just regular people, living our lives; instead, we have been singled out for attack, poor things. I am one of a massive movement that has been trying to get writers and journalists to use “person first language” for over two decades, with little success.
“Patient” may not technically carry the same weight as “afflicted,” but its usage, its social weight, puts it in the same category as this more obvious “victim” language. To be a patient is to be medicalized and stripped of our identity as people who exist and act outside of medical settings. When I’m blogging about disability or training my service dog or having a phone conversation using a TTY, all of these activities are influenced by my having a disability, but none of them have anything to do with my being a patient. I am not getting medical care as I sit here and type this. I am living my life.
Even when, last night, I used my PICC line — a medical device that was inserted into my arm in an operating room — to infuse an antibiotic prescribed by a doctor, I was not a “patient.” I was and am a person living with Lyme disease, managing and treating my disease. I can blog, eat, train my dog, follow Twitter, watch a movie, and/or talk on the phone while I infuse. I am acting, not being acted upon.
However, when the visiting nurse comes tomorrow to change my dressing, I will be her patient for the half-hour or hour she is here. She will be doing to me — flushing my line, cleaning my arm, putting on a new dressing, asking me questions about my symptoms and functioning — but once she is gone, it’s just me in my home.
I am not the patient, however, of my personal care assistants (PCAs). I decide what needs doing and how it will be done. They are my assistants, not my nurses; therefore, even when they are assisting me to do what I can’t do for myself, I am not their patient or their client. I am their employer.
When People with Chronic Illness Use “Patient”
My feelings are less straightforward when I read articles, posts, fliers, etc., by people with my conditions who refer to themselves/us as “patients.” There are two main reasons why they use this term. One reason is the same reason that journalists do — it’s convenient. Saying “Lyme patients” is much shorter and less awkward than saying “people with Lyme disease.” It’s often used as a way to distinguish the person with the illness from others who might be concerned with the issue, such as “families,” “caregivers,” and “healthcare providers.”
However, there’s another issue at stake for those with my disabilities, in particular. Myalgic encephalopathy (ME), multiple chemical sensitivity (MCS), and Lyme disease all have histories of being treated as “not real” illnesses. We are told that our symptoms are psychosomatic. We are told the illness is a product of our personality or lifestyle. We are told there is no such thing as ME, MCS, or chronic Lyme, and the labels for these diseases carry these messages.
Our diseases are given mocking, belittling names: “Yuppie flu” or “chronic fatigue syndrome” for ME/CFIDS, as if the only symptom of ME/CFIDS is “fatigue.” The chemical industry’s name for MCS is “idiopathic environmental intolerance,” putting the emphasis on the first word — idiopathic — which means “of unknown origin” and removing “chemical” from the name altogether! The Infectious Disease Society of America, which has been prosecuted for conflict of interest in its relationship with the insurance industry, denies that chronic Lyme disease — persistent infection by the bacteria and parasites that cause tick-borne disease — even exists. Instead, anyone who is still sick after a month of Lyme “treatment” is said to have “post-Lyme syndrome,” a psychological response to illness.
In other words, words matter. I didn’t need a study to prove it, but there is one. Several years ago, a study about the impact of the name of CFIDS/ME was conducted. A mixed group of fourth-year medical students and medical residents were each given a case study of someone with ME/CFIDS, including symptoms, history, etc. They were randomly divided into three groups. All got the same case study, but the name of the disease was different for each group. One-third of the participants’ patient was diagnosed with “myalgic encephalopathy/ME,” one-third with “Florence Nightingale disease/FN,” and one-third with “chronic fatigue syndrome/CFS.” Those who received “FN” or “ME” cases believed the severity of the patient’s illness was greater than those who had the “CFS” case study. Further, 67 percent of those with the “CFS” study recommended psychiatric treatment for the patient, versus 53 and 48 percent for FN or ME, respectively.
I didn’t need a study to tell me that the name of my disabling condition is insulting and misleading, because I’ve lived with that perception since 1995. I have likewise lived with doctors and lay people discounting my MCS as psychosomatic, as a form of “hysteria” or paranoia. Again, this didn’t happen in a vacuum. The chemical industry has been actively working to discredit the experiences of people with MCS — often in partnership with federal agencies and the military — for a very long time. They have money on their side.
Then, I got Lyme disease, which I had previously thought was not a “controversial” illness. Once again, money has changed the perception of how this disease is perceived and treated — and therefore how I was perceived and treated (or left untreated). As in the other cases, the name of the disease, “chronic Lyme,” has been dismissed.
Given how much people with my conditions have been derided, denied, and denigrated, it is not surprising that most of the individuals and organizations who advocate for us — who try to raise awareness about the validity and seriousness of our diseases — focus on the potential severity of symptoms and systemic injury, and the medical proof of our illnesses — the brain scans, blood tests, or other objective measures of living with an organic disease. Almost without exception, those who do this work refer to us as “patients” — Lyme patients, ME patients, CFIDS patients.
One exception is advocacy groups and organizations for people with MCS. Some do use the term, “patient,” particularly those in the medical and scientific fields who are concerned with chemical injury and MCS. However, because most with MCS view our condition as having been caused by being poisoned or chemically injured, and our symptoms as the more severe manifestations of poisoning that everyone would have if the dose was sufficient, not all with MCS even consider ourselves “sick.” For many, it is the rest of the world that is poisonous, and we are just the canaries in the coal mine. Others do identify as ill, as patients.
So, when I see “ME patient” or “Lyme patient” on an educational or activist website or blog, I do cringe, but I don’t blame the person who penned the phrase. I think it feeds a need for many of my community to have our real sufferings — particularly our mistreatment at the hands of the medical profession — acknowledged.
Lymie, Canary, PWC
I much prefer, however, the lingo we have developed among ourselves. As with any subculture, we have created our own “in-speak,” which says more — and yet uses fewer words — than the awkward language of the professionals and the pitying, patronizing, or disputing public.
When I first got sick, the terms most used in the MCS and CFIDS/ME community were “EIs” for those with environmental illness, and PWC, which — adopted from the AIDS community’s use of PWA — meant “person with CFIDS.” Over time, those with MCS have mostly switched to calling ourselves canaries or MCSers. “PWC” has fallen out of use, but I don’t know of any neat replacement; sometimes it’s CFIDSer or CFSer or simply “ME.” (As in, “I’m an ME.”) In the Lyme community, there is consensus — we have the delightfully short, descriptive, and playful, “Lymie.” (One Lymie, two Lymies.)
None of this even gets into how I navigate the broader disability community — particularly the disability rights movement arm — using words like “sick,” “ill,” and “disabled,” interchangeably to describe myself. That does not always go over well, let me tell you!
But you all have been patient to read this long, dense post, so before you get sick of the topic, I will end, because five other people with chronic illness (who may or may not identify as patients) will be chiming in on this discussion tomorrow!
– Sharon, the muse of Gadget, and Barnum, SDiT