Tuesday, September 01, 2015

True Love Means Respecting My Independence

In a recent viral video called Blind Devotion, true love is described the following way: “Cecilia will never know how much I do for her and I don’t need her to know. That’s how much I love her, even though she doesn’t want me to.”

And this is how the video ruins what is otherwise a wonderful description of the worries and reactions of someone who has been diagnosed with a chronic illness or acquired a disability.

I’m about to rant. You might want to watch the video first.

What’s right about Blind Devotion
So much about this video got it right. When the woman (Cecilia) is diagnosed with the illness that will take her sight, her reaction and worries ring true. Whether you have a disability or a chronic illness, this will remind you of the early days.

Worrying about whether you can continue to work, how you might lose your career, and can you continue to do something as simple as laundry, is something every person with a chronic illness has worried about. The crying, the anger, and frustration, the not knowing how to tell the people who love you. And more than that. Wondering whether you will become a burden — will your spouse be better off with someone who is able-bodied, healthy? Believing that you are becoming your spouse’s patient instead of their partner.

The next part, narrated by the husband (Louis), also starts off right on the money. It shows how his wife has figured out how to do household chores, such as the laundry and cooking his breakfast, things that are important to her. The shot of her face while she is doing the laundry says everything. The smile of triumph, of love. I bet you know that feeling, too.

What’s wrong about Blind Devotion
Early in the video, the wife says that the commute to work is one of her favourite things. It’s her time to herself, time to breathe and clear her head. Later in the video, after the diagnosis, her husband says “she still insists on going to work.” And this is the first time I could feel my hackles rise.

Why wouldn’t she? She’s going blind, not losing every other part of herself. Having a disability or chronic illness doesn’t mean you instantly want nothing more than to sit at home for the day, twiddling your thumbs until your beloved returns from his day at work.

He tells us how she doesn’t want his help because she has found a way to do the things she wants to do. Louis lets her and yes, I am using the word “let’s” advisedly. Because when it comes to walking to work alone, something else entirely happens.

Louis says “my heart stops every time I think about her crossing the streets of downtown, so even though she doesn’t want me to, I follow her every day without her knowing.” And he does. She walks towards the bus with her white cane, having learned to navigate the streets of the city herself. Yet, he follows her close behind, removing obstacles from her way, even something as simple as preventing a stranger from sitting next to her on the bus! And when she arrives at work, he passes her over to her coworkers to help her get settled at her desk, while placing his finger on his lips.


And something the wife says during the time when she is upset about her diagnosis, but hasn’t told her husband yet, seems like it belongs in this third act. “And now, when all I want to breathe and walk to work alone, I can’t. Because Louis won’t let me.”

Louis following Cecilia to work is not true love. It’s paternalistic coddling. And he compounds his own actions by drawing her coworkers into a collusion of an overprotective bubble. Following her to work infantilizes her. It makes her coworkers — and us — see her as a child who needs supervision. And, just as with a child that insists on doing grown-up things, we all pretend they can. Isn’t it cute, the way she tries so hard? But she’s not really capable, so he follows her around removing every obstacle from her way, giving her the illusion of independence and capability. Because apparently that is something for him to let her pretend she has, not qualities which she can create herself.

True love, my arse! True love respects her wish to be independent, in fact glories in it. It means you stay on the sidewalk outside your apartment and watch your beloved leave for work, just as you did before the disability/illness. And although you might be nervous at the risks she will face, your heart will swell with pride to watch her walk into the world she has created.

That, my friends, is true love. To be there if you’re needed, but wait to be asked.

Photo by David Govoni

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 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?