Monday, August 24, 2015

Is the Term Patient Counterproductive in Advocacy?

“We need to support the journey from passive patient to patient leader. “
-          Annette McKinnon

How do you include the voice of people who live with illness — chronic or otherwise (patients) —in the decisions that affect how healthcare is provided? And how do you do that without these voices being used and subsumed by the professionals who work in healthcare? 

Last week, Annette had a terrific rant about that particular topic, focusing especially on how the terminology that people who live with illness use to describe themselves eventually and inevitably becomes hijacked by professionals. She asks “Where is the attitude that patients are part of the team in healthcare, that we are partners? Why are we always asked to participate inside a pre-determined frame? When will we see co-design of new policies, and ultimately co-production?” All excellent questions that got me thinking. And when she ended with the rousing call to action that started this post, I had to jump into the debate with my perspective.  

Which is about language and power.

I believe that as long as we use the word ‘patient’ to describe ourselves, we will not have any kind of meaningful participation in healthcare. I believe that this word is an obstacle to being seen as active influencers, or even stakeholders in the process.

I straddle two worlds, those of health advocacy and disability advocacy. In the latter, there has been great efforts made to change the language describing those of us who live with a disability. Instead of crippled, the afflicted, handicapped, special needs, or invalid, the recommendation is to use, simply, person or people with a disability. This puts the person first and the disability second.

The term patient doesn’t do that. Patient identifies you solely in relation to your illness, specifically in connection to being in receipt of healthcare. And that gets all tangled up in the way health professionals view patients.

Being a patient is an inherently passive state. Well, if you’re a reasonably empowered patient — or ePatient — you may disagree vehemently with this assertion, but bear with me. One of the common experiences of someone who enters the medical system to receive care, is the loss of autonomy and identity. Although there are many good doctors out there who work as teams with their patients, so many others do not. Which is not necessarily their fault. The entire system is set up to remove the patient’s identity, leaving them a case or with the label of a particular illness (the broken femur in Bed 3). The goal of the system is to make sure that the recipient of care follows along, is in fact a compliant patient. In other words, does what the doctor tells you to do.

Medical professionals can’t help it. Neither can the people who work in the pharmaceutical industry or in hospital administration. Everything they do is for the patients, but none of them do so using a customer service model. None of these is considered a service industry, instead they are highly paid experts (well, maybe not the nurses who ought to be paid more) who develop and implement care, procedures, medications to treat an illness or condition, but not necessarily the person.

Because there are no persons with illness within this system. There are only patients. And patients are not stakeholders. They are recipients of care.

Using the word patients to describe ourselves thus uses the language of the system and people who control healthcare — the aforementioned medical professionals, healthcare administrators, and pharmaceutical executives. And when you are talking about a system controlled by certain people, their definition is the one that rules the day. Therefore, using the word patient will also convey the meaning of the word defined by the people in power. Which, in the case of the word patient as used in that context, is incompatible with empowerment, being a stakeholder, or an active influencer.

In the disability community, it took the deinstitutionalization movement of the 1970s to start the process of people with disabilities being seen as people first, and people with the right to make their own choices. It involved a wholescale rejection of the medical model — in which medical professionals made the decisions they believed were best for the poor crippled people — to the consumer model, in which the person with a disability consumes a variety of services, and is in full control of their life. At least, that’s the theory. There are still moments when it’s obvious that we have a long way to go. But that’s not the point of today’s post. Today, let’s stick to the theory.

As patients, we exist within the quintessential medical model. Expecting this system to be able to treat us as two different kinds of patients — the individual who receives care and the individual who is a stakeholder and active advocate — is a losing battle. When a system as huge and complex as the healthcare system is built in a way that views and treats individuals who have an illness as the recipient of care, trying to make that system see us in that other role, as active partners, is impossible.

So what’s the solution? I believe it is to begin to take control of who we are and what we do as stakeholders in the healthcare system. To adopt the consumer model whenever possible and perhaps even in the doctor’s office. And it begins with changing the language with which we describe ourselves. Instead of finding a new term to describe ourselves that use the term patient — as Patient Advocate and Patient Navigator have both been absorbed by the system to describe professionals helping recipients of care — to something entirely different.

I never use the word patient to describe myself, unless I am in a doctor’s office. Instead, I use the term health advocate to describe myself in the contest of my work as a stakeholder and an empowered person who lives with chronic illness.

Are there better terms? I’m sure there are. What do you think we should call ourselves? Or does Patient work for you?

Tuesday, August 18, 2015

Writing with a Chronic Illness: Creating a Writing Habit

Writing is a muscle. The more you exercise it, the stronger it gets.

So, how do you exercise this particular muscle when you have a chronic illness? You start with creating a writing habit, and a writing trigger.

Lucy tries out for the position of Muse
The Writing Habit
Creating a writing habit starts with showing up. Day in, day out, sitting down by the computer (or whatever is your writing instrument of choice) and writing something. Some days, it will be like pulling teeth, and others, it’s like transcribing from a mystical well of story deep inside. Those days are fun.

The writing habit is much like any other habit — it takes time to develop and not the supposed three weeks they’d like us to believe. Creating a habit, whether flossing or writing, takes three months or more. If you really want to be a writer, you have to show up every day of those three months. If, on your days off, you feel wrong about not writing, congratulations! You have successfully created a writing habit.

Ideally, the showing up should be at the same time in the same place every day. The Muse (and your writing muscle) is flighty and if you don’t pin her down, she’s going to swan off to look at butterflies. Trundling off to your computer right after breakfast every single day puts her (and you) on notice that you mean business. It also helps you get so immersed in what you’re writing that it starts to take over your life. That makes it a whole lot easier to just start typing, rather than having to find the tone and mood, and remember your character’s motivation.

I can hear all of you saying “but, but…!” out there. And I know. This writing habit stuff is a lot harder when you have a chronic illness or chronic pain. When you don’t know whether you’ll be able to get out of your PJs, committing to showing up and pinning down some recalcitrant Muse is a lot to ask.

So you show up in other ways. Maybe you don’t actively write on bad days, but you do a lot of thinking about your story. It can happen just in your mind, as well as on your computer or on a piece of paper. If you`re mainly thinking, keep something handy on which to make some notes so it doesn’t get lost. On days when the brain fog is as dense as peasoup fog, maybe you read a book or an article about writing. Perhaps you talk about writing, or maybe you fantasize about your fantastical future writing career.

The key is to make it writing part of your everyday. That’s how you show up.

A Writing Trigger
In a chronic illness community, there’s a lot of talk about triggers. They are usually things you don’t want in your life, because they trigger a flare or an episode of chronic pain, migraine, RA, Fibro, etc. A writing trigger, on the other hand, is something that nudges you to write and it’s something you can create yourself.

I recently accidentally created a writing trigger. In the first week of my vacation (actually, the first day), I was called back to work to write a few more articles that were time sensitive. By this time, I’d crashed after a high-production July and felt quite incapable of writing one more word. So I put together a survival kit in the hopes it would help get my brain going enough that the pieces would get done.

Not only did it get my brain going — that’s the benefit of drinking Coke when you’re normally un-caffeinated — but it worked so well that I decided to try it out when it came time to get back to my book. Within a few days, a mini-Coke and three Skippers had become not only part of my writing ritual, but a trigger. I pour the Coke into a glass, add a slice of lemon, and take a sip. This leads to an urge for a Skipper, and I go get three out of the bag. I eat one, and put the other two on the desk next to the keyboard. And then I start writing.

It has occurred to me that in the acknowledgements of my next book, I have to thank the Coca-Cola Company and Vermont Nut Free Chocolate for fuelling the writing.

Your trigger can be anything you want. It might be doing some gentle stretches or taking your meds with your morning cup of coffee or tea. Maybe it’s the rhythm of having breakfast, taking the dog for a walk, and then sitting down at the computer. Or perhaps you need to sing a 1990s power ballad first. If you do this every time you sit down to write, your subconscious will create a link and before you know it, the words will start spilling out anytime you hear this song

Which can get awkward in the supermarket, but there you have it. And the great thing about the trigger is that you don’t need to adapt anything because of your chronic illness. A trigger is a trigger.

How do you accommodate your chronic illness when you write?

Friday, August 14, 2015

Pushing My Limits for Parapan Am Wheelchair Rugby

         David Wilsie, member of Team Canada wheelchair rugby team

I’ve loved this sport since I first saw the movie Murderball — there’s something about the abandon and apparent recklessness with which it’s played that’s just… well, a lot of fun. When I saw that the wheelchair rugby was part of the Toronto Parapan Am Games for the first time, I had to see it. (click photos to embiggen)

But there were two obstacles. One, the wheelchair rugby venue was in Mississauga, a good 30 km from where I live. Although my range has increased in terms of how far I’m able to take a long walk/wheel, that’s still twice as far as my pain levels have allowed me to go in a vehicle for over a decade. The second was that I’d have to miss my mandatory rest period that helps manage my fatigue and pain levels. This is something that hasn’t happened in over a decade. The idea felt more than a little risky.

I got tickets anyway. There was always the possibility of backing out. Still, we assumed not to the point that The Boy took the day off and we were getting increasingly excited to go.

And then my back crapped out on Sunday. I still don’t know what I did, but it was definitely the kind of injury that would prevent rattling around in a car and missing the mandatory nap period. It’s really amazing how my body has a unique sense of timing, scheduling injuries to mess as much as possible with any special plans. Given the level of wreckitude, I was pretty sure I’d be missing the games, but decided not to make any decision until Thursday morning.

And somehow, my back healed almost back to normal in three days. And it was one of those moments when it was yet again brought home to me just how much my life is still changing. In the past — even a few years ago — that kind of injury would have required weeks to heal. I’m sure the steroid shot that I have on board helped the process along, but the foundation for that is Humira allowing me to continue to build strength, even a decade after I first started Biologics.

So we went. In one of the more uncomfortable vehicles the company had and naturally, I was situated above the wheel well. It didn’t matter. I was going to murderball wheelchair rugby!

There were three games: the battle for fifth and sixth place between Argentina and Chile (the Toronto Parapan Am Games was Chile’s first competition outside South America), and the two semifinals: Canada versus Brazil and United States versus Colombia.

And it was an amazing! Seeing wheelchair rugby on the TV is already fascinating and captivating, but in person? Absolutely incredible. The high energy, the intensity of the wheelchairs being used as battering rams (without hurting anyone), the speed — I love everything about this game. I mentioned that I had found “my sport” to The Boy, who told me his heart couldn’t take it if I decided to play. Although I thought he was being a bit of a spoilsport, I reassured him that I’d meant having found the sport I’d like to watch. Possibly follow obsessively…

What was also pretty nifty about our trip to the Hershey Centre was having to use the washroom. Yes, I’m going to talk about that, but not in the way you’d expect. We needed a family washroom, in order to save other females the fright of seeing The Boy entering the women’s washroom in order to assist me. And this turned out to be a bit of a challenge. First, the wonderful volunteers had some trouble locating it. Well, everyone thought it was downstairs, but weren’t sure where exactly in the bowels of the Hershey Centre this was located or whether it was okay for me to go there.

All of a sudden, I spotted a couple of young men pushing a trolley with washroom cleaning/restocking supplies. I pushed my chair into warp speed and waylaid the team, one of whom agreed to take me to the mythical family washroom. It was a long trip and we had to stop in front of a closed door. Behind the door were the Canadian and Brazilian teams getting ready to go out on the court to warm up. Unfortunately, I couldn’t persuade my escort to introduce me to them, but I did hear the manly bellows of them revving themselves up before going on to the court. And then I got this shot as we went back to our seats. I would’ve loved to be courtside, but alas, accessible seating was much higher.

The computer had given us fantastic seats mid-court, but that area had a fence. Meaning I could see nothing because the fence was in the way. Being proactive, we asked the ushers if we could switch to the accessible area in one corner, which did not have a fancy fence. I had to make sure not to inadvertently rest my feet on the shoulders of the people in front of me, but other than that, I could see everything.

We saw the first game and most of the second, missing the third and going home well before the end of the night. Sense had prevailed when booking the ride and although I was pushing my limits, I had chosen to do so without complete abandonment and recklessness.

So, how much did it cost me? Not in the financial sense (somewhat expensive, totally worth it), but physically. The fatigue hit at 4:30 PM and in waves after that, but a caffeinated and carbonated beverage helped push it back. I’m still more tired than normal and expect that this will last for a few more days. In terms of the pain, it’s not as bad as I’d expected. Thanks to an ultrasound from The Boy before he left, and being diligent about taking pain meds on a schedule, I’m doing remarkably well. For this, too, I am grateful to Humira for allowing me to continue to build strength.

This is not the kind of adventure that will be repeated often, but it’s damn good to know that it’s now possible without weeks of recovery.

And y’know? Even if it takes weeks to recuperate, it will have been totally worth it.