Thursday 25 June 2015

The pressure to be ON.

A few years back I mentioned on Facebook that I had an awkward exchange at a local supermarket. A worker had come up alongside me in an aisle and demanded to know why I was using a walking stick. I was not in the mood. I was tired, trying not to vomit, and simply wanted to buy my food and go home. I gave her a terse, “because I need to” and walked off. I mentioned how rude I felt the encounter was and how frustrating it is that strangers think they have the right to my private medical information and an explanation of my life circumstances. A follower took exception to my refusal to use the opportunity to educate the woman/complete stranger. I was lambasted and told I had a “DUTY” (yes in all caps) to educate people. How was the world to know about Dysautonomia if I refused to educate people. I'll admit I did not respond well to what became an increasingly aggressive and judgemental level of chastisement. I could have been more diplomatic. I could have taken the time to educate her about her ALL CAPS attitude, but I really couldn't be bothered. I was not about to defend my right to be human. And I was not about to try and justify my position by listing off all the work I had done or continued to do. But it did highlight the pressure to be ON (that's for you ALL CAPS lady) 24/7 that many patient advocates* and patients in general face.

Everyday we hear negative comments and deal with ignorant assumptions about illness and disability. We hear it from society, in the media, from friends, family and even doctors. And we all become educators by default. It can feel like you are stuck in an exhausting Groundhog Day at times.

Recently, Jenni Prokopy aka Chronic Babe wrote in a post about haters and advocacy that sometimes it's okay to just wish them a nice day and walk away:

"Some activists will argue with me, saying we should educate haters in order to build a stronger community.

There’s some validity to that, for sure. If I didn’t agree, I wouldn’t have kept going for 10 years—and I certainly wouldn’t do so much advocacy work. But just because we’re sick, and just because we choose to strive beyond the limitations of our illnesses, doesn’t mean we owe the world an education."

We don't owe the world an education.

Oh how I love that.

When I became ill back in 2006 the lack of awareness about any form of Dysautonomia was a huge impediment to finding a specialist and finding a diagnosis. When I tried to explain to others what was wrong, even those who I worked with in health, I was met with a lot of blank stares. With education having been a large part of my then job description, education, awareness raising and advocacy was a logical move as I became a full time patient. I have now spent years doing just that. Not only for Dysautonomia, but invisible and chronic illness and disability in general. I enjoy it and it is a passion.

But what I did not realise was that in becoming ill I was also assigned a secondary job complete with Key Performance Indicators (KPIs) and people would happily and at times aggressively, point out when I didn't meet those KPIs. It was clear I was expected to be ON at all times. And that my workload, as decreed by others, was increasing exponentially.

The problem with being ON 24/7, and I'll admit I did internalise that philosophy and often beat myself up for not meeting expectations, is that I am also a human being. A chronically ill human being.

I can be surly and a dick at times. I can be tired and over it. I can be sarcastic and mouthy. I can be stubborn and have a low threshold for shit. When you add living with a chronic illness that leaves you ill or really ill 24/7, these less flattering aspects of my personality can rise to the top as my tolerance and energy levels plummet.

Sometimes I want to have a life outside of illness. It's vital for maintaining emotional and mental health. Sometimes I want to binge watch Supernatural or The Walking Dead. Sometimes I want to potter in my garden. Or fart around the house and eat way too much chocolate. Sometimes I let opportunities to educate slip by. Because sometimes, like that day a few years ago, I just want to buy some basic groceries and keep the contents on my stomach in my stomach, without having to explain why I am using a walking stick.

Some days when someone makes a crap comment about disability or my still being sick or asks intrusively about my mobility aid I want to simply turn around and say,

“You are being a dick. Stop being a dick.”

If I have taken the time and effort to address the last 48 instances of ignorance I've experienced, is it okay if I let the 49th educative opportunity slide? The answer is, yes. Some people don't want to be educated. You can give 110% and still the person wont have heard a word you said. Sometimes you have to pick your battles and conserve your precious energy. And sometimes I just want to reply in a totally human way.

I don't owe the world an education.

No patient or patient advocate owes the world an education. The vast majority of patient advocates work out of love and passion, and receive little to no (much much higher on the no side of the ledger) remuneration for their time. The patient advocacy network is sustained by a large group of volunteer professionals. I say professionals due to the sheer amount of expertise in the network developed through time, hard work and love. But they are also a profession of people who are frequently managing their own significant illness while advocating for others.

I don't know a single patient advocate who begrudges the time and precious energy they spend educating or supporting others. But I also know how many are making themselves sick in the process. I know how many end up with serious flares and hospitalisations. I know how much goes on behind the scenes as self-care is ignored or the severity of illness hidden while they continue the advocacy work they love.

I also know that in paid employment workers are entitled to days off and leave. I don't know why we struggle to recognise that for the largely volunteer network of advocates we are just as entitled to a break and down time. Time just to be a person. Although in saying that I know from personal experience patient advocates all have one thing in common; a pressing and often overwhelming need to fix many of the problems encountered, yesterday. When in truth and in our impatient logical selves, we know the institutional and community issues we face will take years and a huge combined effort to change.

When I read Jenni's post I couldn't help but think of that exchange on Facebook. Not that it is the only one I've had over the years, but it was the first one where the level of vehemence made me sit back and go “Whoa.” Quickly followed by “Bite me.”

I say this knowing there are people who chose to live and breathe advocacy and education 24/7. As Jenni points out there would be others who would disagree with her own stance on the issue of owed education. And that's okay. If it works for them I say more power to them. But what it comes down to is that it is a choice that each of us must make. And there must be a recognition of the cost of that dedication, and that in the end, that we are all just human beings doing the best we can.

It's okay not to be ON 24/7.

It's okay to not analyse and understand every person's motivation in making a comment.

It's okay to expect others to take responsibility for their own behaviour.

It's okay to just call someone out on their dick behaviour rather than educating.

It's okay to just be a person.

And it's always okay to take time to take care of you.


*I have used the term patient advocate throughout this post, but it could have easily been disability advocate. I am aware that different people identify differently and I fluctuate between both when identifying myself as I don't see them as truly separate. I did have them as an and or, but it just became messy.

Big love to all the advocates who dedicate themselves to helping others. 


  1. Oh how I love this. I feel the same way about achondroplasia/dwarfism. It IS like people expect you to be switched ON 24/7 sometimes. Paste on happy face, greet people with a smile, ignore comments, respond to questions wherever you may be. Are your parents and siblings like you? Are you married to a dwarf like yourself? What about your kids? How do you......? Can you have a "normal" baby? Questions you wouldn't ask anyone walking down the street but because you stand out people expect you're there to educate them at the drop of a hat. Have a "bad day" and you're seen as "that little lady with a chip on her shoulder". There's even pressure from others who share the same condition to ALWAYS present your best face because you're representing every other dwarf walking the planet.
    Gah! I'm ranting! EXCELLENT post Michelle. I'm sharing on Facebook! :)

    1. Yes! The always smiling ready to educate perfect example gets exhausting. As does the if you don't want to discuss it for the 5,000th time or you've been asked the same intrusive question a bazillion times, you are then considered to have an issue. Most of the time I am happy to educate and I do. But some days I just don't want to explain it all. And I don't think that's too much to ask. Being on all the time is exhausting xx

    2. Rant away. This is the place for it after all.

    3. I am so with you on this subject. I wrote a blog entry educating THEM (for the same all caps lady) on how to approach or think about US. Please read, it may give you and anyone else a few good comeback lines. Great points all around. Here is the blog link should you choose to read. Enjoy!

  2. I have gotten so used to telling my story that while I was waiting to get a cast removed I told the young volunteer who was passing out juice (I later realized) the whole thing. It worked out all right since he has the ambition of going into med school. lol

    I don't know how you all do that amount of education. It is tiring to stop in the middle of the grocery store or any where. I find standing and talking really difficult - worse even than walking and talking. Waiting in line ups can be a real killer too.

  3. Oh, I love all of this post. Thanks.

  4. "Sometimes it's okay to expect others to take responsibility for their own behaviour."
    Sometimes? No, I expect others to take responsibility for their own damn behavior ALL the time! I used to be so co-dependent, such a pushover. Growing up in a severely dysfunctional and abusive household, I was the peacemaker, so that carried on to other aspects of my life as I grew up. In my early 20's I began learning about boundaries, which is really at the heart of what you wrote about, Michelle, and my husband and our former roommate did a lot to help me actually practice setting boundaries with others. Being married to someone who has a strong sense of self has been so very helpful in many issues, and this one too. I've learned that I don't owe anyone anything, unless I purposely decide to do so. (Leaving a very close knit and strongly fundamental Christian church helped me to hone my boundary setting skills a LOT! I got more comfortable with realizing that I don't "have" to do something just because someone else wants me to, even if and especially when they try to guilt me into it by whatever means.)

    That doesn't mean I'm not open to educating or advocacy or whatever. I'm usually an open book, when approached with respect and kindness. I have also learned, being a professional patient these past years, that I have the right to be honest about how shitty I'm feeling and how I don't want to bother explaining myself. People take it surprisingly well when you tell them, "I'd normally answer your question but I feel really shitty/am close to passing out/can barely keep my stomach right side out and inside me/can't think through the pain and exhaustion. Catch me another time and I'll try to answer you." If I don't 'know the persona and want to shorten that down, I'll go the route that you too, Michelle, and simply say, "I need it." or whatever's appropriate, and leave it at that. If they REALLY wanna know, they can freaking Google it.


All who are lovely enough to comment should be showered with cup cakes, glitter and macarons. I promise to use my spoon bending mind powers to try and get that happening for all who are lovely enough to share their words. Those who go the extra step to share posts should really get a free unicorn. Or at least the gift of finding the shortest and quickest line at the supermarket on a regular basis. xx

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