Posts Tagged 'PFAM'

It’s Carnival Time! #ADBC and PFAM

Martha at Believe in Who You Are is the host of the October edition of the Assistance Dog Blog Carnival. Even though she is between dogs right now, she has taken up the challenge and come up with a great theme: Moments. Please visit her Call for Entries for topic ideas, guidelines, the deadline, etc. Thank you, Martha!

Assistance Dog Blog Carnival graphic. A square graphic, with a lavender background. A leggy purple dog of unidentifiable breed, with floppy ears and a curly tail, in silhouette, is in the center. Words are in dark blue, a font that looks like it's dancing a bit.

Is this the Moment for you to get involved?

Lately it has struck me how many people follow assistance dog blogs (mine or others) who are not assistance dog partners. I know a lot of wonderful dog trainers and lovers of dogs who follow After Gadget here or on Facebook. When I learned of the topic for the next ADBC, I thought, “Anyone can write on this!” I mean, I know some of you who train assistance dogs or who train pet dogs but read about service dogs on lists or blogs or Facebook must have moments you want to share — don’t you? Moments where you read something about assistance dogs or training that made you stop and think? Moments where you read an idea relating to a service dog issue and you realized it could apply to your pet dog or you? Moments that moved, inspired, or irked you?

Why not join the carnival? Come on over, the moment’s right!

And speaking of getting more people involved in the ADBC, I’ve decided to introduce the hashtag #ADBC on Twitter so that people who are tweeting about the Carnival can more easily spread the word. So please, if you write a post for the ADBC or you read a post about it you like, retweet and add the hashtag #ADBC. I am very fond of everyone who participates regularly (or sporadically) and always look forward to their take on the new topic. At the same time, I think it would be fun to expand our family and get new people reading and posting every quarter. Thank you for your help! (By the way, my handle is @aftergadget.)

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.

Meanwhile, another blog carnival is taking place now. The monthly Patients for a Moment (PFAM) blog carnival is being hosted today by Selena of Oh My Aches & Pains! She has done an amazing job of putting together a really big and fantastic(ally frightening!) carnival of The Fright Files: Stories of Medical Mistakes. Don’t miss it!

– Sharon, the muse of Gadget, and Mr. Barnum, SD/SDiT

I’m Hosting PFAM at Bed, Body & Beyond

Just a quick announcement that I’m hosting the Patients for a Moment (PFAM) blog carnival again*, this time at my other blog, Bed, Body & Beyond.

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.

Since my other blog focuses on writing and being a writer, the theme I have chosen is writerly:

Why do you write? As a person with a disability or chronic condition, why do you blog and/or write?

More elaboration, elucidation, and questions to pique your imagination are at the call for submissions! I hope you will hop on over and check it out.

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

The first time I hosted the PFAM carnival was here at After Gadget.

What’s in a Name? Lymie, yes. Canary, yes. CFIDSer, yes. Patient, no.

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!

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.

Are You a "Patient"?

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

*Starting in 2012, PFAM will move to a monthly schedule, which will make it slightly more doable for me. However, hosts will still be required to give only 10 to 14 days’ notice for bloggers to write and submit a post on that month’s topic. Lead time is my real stumbling block.

Both Carnivals Accepting Late Submissions: ADBC & PFAM

Assistance Dog Carnival Deadline Pushed Back

Assistance Dog Blog Carnival graphic. A square graphic, with a lavender background. A leggy purple dog of unidentifiable breed, with floppy ears and a curly tail, in silhouette, is in the center. Words are in dark blue, a font that looks like it's dancing a bit.  Cyndy Otty at Gentle Wit has asked me to announce that, due to illness and to others’ requests to get posts in late, she has extended the Assistance Dog Blog Carnival deadline another week. So, if you want to write and submit a post on the topic of “Achievement” in relation to assistance dogs, you now have until October 31 to do so. (And if you wrote something that you’re not 100 percent thrilled with, as some of you have tweeted about, you now have time to meet your needs for perfectionism.) This is Cyndy’s call for entries. And here is the ADBC home page, answering all your burning ADBC-related questions.

I’m Patient about PFAM Entries

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.  I’ve also received two terrific PFAM entries from people who were “past the deadline” and a question from another about whether she’s too late to submit. Well, phooey on the deadline. This is a carnival “by, for, and about” people with chronic illness, so if we don’t understand about life/illness getting in the way of meeting deadlines, who the heck does? I haven’t even finished my own PFAM entry! So, if you haven’t submitted one because you think you’re too late, don’t fret. I’ll gleefully accept entries through 2:00 AM Eastern Time tonight of whatever time zone you’re in. (Or, you know, a few hours after that if you really need it.)

I’m thrilled with the thoughtful posts that have been generated by my question, “Are you a ‘patient’?” and deeply relieved and grateful that I am not facing a “silent” carnival (where nobody submits posts!). Keep ’em coming!

Also, if you have already submitted your post, first of all, thank you! Second of all, if you are interested in making your post more accessible to readers and commenters by Wednesday, you still have time to change settings or make edits, if you so wish. One simple step is to disable “word verification,” which presents a barrier to comments by blind readers as well as neurological and other disabilities. Find five relatively easy steps to make your blog or post more accessible here and more info on blog accessibility here.

In Conclusion . . .

If you have a submission for ADBC, post that at Gentle Wit.

If you have a submission for PFAM, post that in the comments below, or at the original call for subs.

Thanks, everyone!

– Sharon (@aftergadget), the muse of Gadget, and Barnum, SDiT

PFAM Announcement: Are You a “Patient”?

As I announced last month, I’m hosting the upcoming edition of the Patients for a Moment blog carnival! I hope you will participate!

I chose a topic that really goes to the heart of the matter — that takes on the name of the carnival itself! Here is the topic. You can tackle some or all of these related questions/issues:

What makes someone a patient? When, and in what contexts, do you think of yourself as a patient, and when do you not? If you live with a chronic illness, condition, or disability, do you refer to yourself as a “patient,” a “person with,” a “person living with,” a “person healing from,” or do you prefer to keep your disability or condition in the background? If you’re a medical professional or a family member or friend of someone with a chronic condition or disability, how to do you refer to them when speaking to others or blogging?

And of course, the most important issue is WHY do you choose the language you do?

The deadline for submissions is Sunday, October 23, by midnight of whatever time zone you’re in (-ish). While I definitely need most submissions in by Sunday in order to put the post together, I know it can be hard to meet deadlines when you’re ill. Therefore, if you are writing something for the carnival and need a little extra time, please contact me, and we’ll try to work something out so I can squeeze you in.

The blog will go up Wednesday, October 26.

Of course, it’s lovely if you write something new just for this edition of PFAM, but if you find yourself running out of time, and you have a post already up that answers this question, please send it along. To submit, please comment on this post with the following information:

  • Your name (as you’d like it to appear in the post).
  • Your blog’s name.
  • Your post’s title.
  • Your post’s URL.

I really look forward to reading your posts!

By the way, if you are new to After Gadget, I encourage you to try to make your posts for this edition of PFAM as accessible as possible to people with a wide range of disabilities, including putting descriptive alt tags on any photos, transcriptions for any videos, and disabling word verification for comments. This will not only enable more people to enjoy your work and to experience greater ease in navigating the web, but it may bring you new readers and possibly followers and subscribers! Find out details about steps you can take to make your blog more accessible (many of which are very easy) on my ADBC page. Thank you for your consideration!

Please also spread the word on Twitter, Facebook, on your blog, and everywhere else! Thanks so much!

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

I’ll Be Hosting a PFAM Blog Carnival Next Month! Please Be “Patient”!

I’m thrilled to announce I’ll be hosting a couple of future editions of the Patients for a Moment (PFAM) Blog Carnival. I hope you will participate!

PFAM is a biweekly blog carnival, described thus on the PFAM “About” Page:

Patients For A Moment is a patient-centered blog carnival – for, by, or about patients – that was started by Duncan Cross (http://duncancross.net//). 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.”

PFAM has been going strong for three years, but I have rarely taken part. I love blog carnivals, and I have wanted to take part more often than I have. So, what has stopped me?

The main reason is that, since it’s biweekly, there’s not a long lead time. With my symptoms and unpredictable functionality, it’s hard for me to write blogs without a substantial amount of time to gather my thoughts on a topic that hasn’t already been floating around in my head, write it, and submit it on time (always assuming that I remember to write and submit it — a very, very big assumption!).

The other reason is that I sometimes don’t have much (or anything) to say on the given topic. (I know, hard to believe: me, without something to say!) That’s because the PFAM structure is that the host asks a question pertaining to living with illness, disease, or disability, and requests blog posts that answer that question in some way. While many are general enough that I could answer them — What are you afraid of? What are you thankful for? What are your guilty pleasures? — sometimes the questions were so specific, and my life so limited, there wasn’t much I could say. For example, your five favorite places to go (I can only go one place, aside from medical appointments); how do you stay physically active (I don’t/can’t); what is your must-have music (I usually can’t tolerate music), etc. Often, I’d think to check out PFAM and find a really great topic that I definitely had something to say about had been published the week before (or I’d plan to write on that topic and forget), and then the next one was a topic that didn’t fit me.

Another issue, though a small one, is that I don’t usually think of myself as a “patient,” and I don’t blog that much specifically about my illnesses/disabilities. My life as a disabled person is the background to almost every post, but I’m not really a “chronic illness blogger” — I don’t generally write posts about treatments, coping, doctors, how my life has changed since I’ve been disabled (I barely remember what it was like anymore not to be disabled), etc.

However, so often I find that the best way to get involved in something is to alter it to fit me — which usually involves taking a leadership role. Well then, what better way to get involved in PFAM than to host?

So, I will be hosting two PFAM editions in the next few months. Here at After Gadget, on October 12, look for the announcement of the topic for the October 26 edition of PFAM. Then, in December, I’ll host an edition at my other blog with a topic appropriate for that blog’s focus.

Meanwhile, if you didn’t know about PFAM before, and you’re interested in reading archived or new editions, or in contributing to the carnival, check out the PFAM home page!

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


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