In his video “The Slow Death of Compassion for the Chronically Ill,” Ken McKim theorizes that one reason compassion for people with Chronic illness are being saddled with unrealistic expectations due to the prevalence of inspiring stories. I was just talking to a friend about the fact that mainstream writing about people with disabilities is only ever presented as positive or inspiring.

I’ve become increasingly upset by the overwhelming amount of posts on a Facebook IDB (Inflammatory Bowel Disease, aka Crohn’s or ulcerative colitis) group that are either prefaced or appended with an odd sort of disclaimer. The script is becoming so common that I’m wondering if I missed a borg-assimilation software upgrade. The details may vary, but it usually looks something like this:

“Sorry for the rant, you can ignore this post and it won’t hurt my feelings but I needed to get this off my chest! I am in so much pain, it feels like my insides are on fire. I’ve been waiting for my doctor’s office to call me back for 3 days. I’ve been curled up in bed for days and vomiting almost non-stop. Then my boyfriend made a joke that I was just being lazy to avoid doing the chores! My mom says it’s all the chemicals in my diet and I just need to go vegan to be cured. My coworkers are starting to complain that I’m not pulling my weight at the office. No one understands! Anyway, sorry to be so negative… Tomorrow is another day and I’m sure I’ll get over this funk by tomorrow! :)”

This happens in real life, too. Most people feel so uncomfortable with expressing facts or true feelings that could be seen as less than inspiring, that they must couch them in dismissive language. It can be common for people with invisible illnesses to “pass” as healthy most of their lives. I have done this for nearly all of my professional life and as much of my school life as possible. Extended hospital stays, Prednisone-induced moon face, and other issues are often the only things that force me to disclose anything to new friends or coworkers. I’ve benefited a lot from this, but one downside to keeping this major aspect of my life under wraps is that I sometimes desperately need to speak openly with people who understand. Speaking openly allows me to feel as if an actual weight has been lifted off my shoulders. Even when I am talking about distressing things, I usually feel much better after getting it off my chest, and being able to drop the metaphorical mask I wear.

I am not a good cover girl for your advocacy marketing. Throughout my 20 years of chronic illness, I have had nearly no remissions. In fact, the biggest success I’ve had is breaking the cycle of needing intestine surgically removed every 3 years. Things that the very sick would consider successes – earning my undergraduate degree along with my peer cohort, continuing to be employed full time since graduating college 11 years ago, earning my MBA degree while working a demanding job – are not really the types of accomplishments that land you a guest spot on a national talk show. One of my personal favorite accomplishments has been not becoming a shut in, despite severe illness and subsequent anxiety that has made that task a daily struggle for the past 9 years. No one is handing out trophies for “Leaving the House.”

We need to move away from the aggressive positivity that makes everyone else feel safe and secure and start speaking up about our personal truth. Facts are not rants. You can be a strong, wonderful person who can still acknowledge that you sometimes (always?) have it rough. Just continuing to live each day, and keep on living, is often an incredible accomplishment. We need to be kinder to ourselves and more appreciative of what we are able to endure. The world needs to hear our stories, even if they don’t always have Hollywood endings.

 

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18 Responses to Too Many Inspiring Stories?

  1. THANK YOU, Carly! And you DEFINITELY deserve the “Leaving The House” Award for 20 years of notable accomplishments!!!

    You have so nicely encapsulated the niggling frustration that I too feel in my own particular chronic illness adventure (cardiovascular disease).

    And even the definition of “rant” is publicly skewed: the patient example you offer here – vomiting non-stop, three days of “so much pain”, loved ones making accusations of “just being lazy to avoid doing the chores” – represent a grim reality that most non-sick people simply have no clue about, and yet feel strangely qualified to judge.

    If even one of those horrific descriptions of daily chronic illness reality dared to strike somebody lucky enough to live in the La-La Land of healthy privilege, there would not only be unapologetic RANTING with a capital R going on, there’d be a book and a movie deal in the works.

    On my blog, I’ve written a lot about this odd phenomenon of fake positivity, including the concept of “emotional labour”. Researchers who have studied this concept among chronically ill heart patients have described this as “the suppression of feelings to provide a welcoming outward appearance”. More on this at “Smile, Though Your Heart Is Aching: Is Fake Smiling Unhealthy?” – http://myheartsisters.org/2012/04/05/faking-smiles-unhealthy/

    I’m intrigued by this phenomenon because I too am so sensitive about NOT writing about my own bad days – must keep up that welcoming outward appearance! But it’s mostly because I’m hardly able to brush my teeth on such days, never mind write about them!)

    The concept of emotional labour might also help to explain why, perversely, I personally feel simply exhausted rather than inspired by all of those Patient-As-Hero stories, because I know that so much of those stories depend on the degree of original heart muscle/valve/functionality damage inflicted during a cardiac event as much as on any kind of inspirational heroics afterwards.

    Patients-As-Heroes become media darlings (although representing only a signficant minority, by the way) and serve to make the rest of us lesser patients feel like failures by comparison if we too are not training for triathlons or embarking on solo round-the-world sailing adventures.

    Hugs and thanks to you, Carly.
    C.

  2. carly carter says:

    This is beautifully put. I kind of want to smack people when they need you to be all rainbows and unicorns all the time.

    We deal with reality. It’s often ugly and painful.

    Better to speak with honesty and truth and NEVER apologize for being in pain.

  3. Mike Hoskins says:

    Great post and intriguing topic, Carly. Thanks for sharing this. Here’s my thing: it’s such a balance between the good, bad, ugly, and inspiring. Some days, I need that motivation and inspiration and sometimes even feel like I fall into that category of being able to offer that. Other days, I’m not in the mood to be motivated or inspired and just need to tell it like it is. And without that judgment, from the uninformed, or those already-inspired who want to inspire me. It changes all the time, and I think there has to be a balance. So many of us started out in the patient online community to share those “real” stories that weren’t the horror stories, the ones we could only find back in the day. Now, there’s so much inspiration that it can get overwhelming. And yes, there’s that interesting phenom that Carolyn mentions about trying to put on a happy face even though we’re not, and how sometimes that really is what we need to step forward. All we can do our best, based on the moment we’re in. Tell it like it is, and hopefully count on others in our own patient communities to be able to sort through and find what they need when they need it.

  4. Misty says:

    I do this all the time! Although, in my fibro/ME support group, I feel comfortable “ranting”, I still preface it with just that sort of thing.

    We have a daily “Gratitude Thread”, which I post for the group, for people to acknowledge 3 positive things. But, at the end of it, I include a reminder that our group is a Guilt Free Zone. I’ll make sure that I sometimes point out that Guilt Free applies to finding positive things, too.

    I really needed to read this. I have a vent that I really need to express, and I started writing it, but worried about it being a downer. I’ll finish it now, and post it.

    Thanks for writing this.

    • Carly says:

      Thanks for the comment. I think the positive things post is a great idea! It’s important to remember the good things we have going for us. But it’s just never the whole story and that’s okay too.

  5. This is a great post (I wrote along these lines a while back http://strangelydiabetic.com/2012/07/06/a-thin-line/ ). We see this all the time in the diabetes community, there are literally world class athletes and other famous people with diabetes and they often donate time to inspire the children with the condition, testify before Congress, interviews… the end result is a very skewed public perception of what type 1 diabetes is like

    • Carly says:

      Scott, I read your blog post and liked it a lot. Just yesterday, I did the yearly walk for Crohn’s and Colitis. They had two honored heroes – teen girls who got up and spoke very briefly. While people in the know realize these can be truly horrible illnesses, the talks focused on how grateful they were to find friends through the youth and college programs and their plans for the future and hope for a cure. Appropriate for the setting – motivational and upbeat, but couldn’t we raise more money by being more honest about how painful and debilitating digestive diseases can be?

      • I’d think so, in the Type 1 community there is a lot of focus on the cute kids with big smiles. It bugs me that fundraising uses them as a ‘hook’, while the 85% of Type 1s who are adults were pretty much ignored.

  6. Feliz says:

    Thank you for being perceptive of this. It’s hard to be positive all the time – some days you just need to feel “sorry” for yourself. It’s fine. Everyone does it. But people need to realize that a “bad” attitude is ok to have, and not everyone has to be positive. We’re not making ourselves sick. We have the right to be pissed about it.

    • Carly says:

      Hi Feliz, Thank you for reading. I try to think of it not in terms of being positive or negative, but just being honest and balanced. If you’ve been in a long rough patch of illness, you can honestly talk about your symptoms and emotions, and then later if you are feeling well you can talk about how great that is, too. But you shouldn’t feel like you have to “put on a brave face” when you aren’t feeling that way. I think not being honest hurts the public perception of how difficult and life changing chronic conditions can be and really how tough most people are who fight with these issues daily!

  7. […] and not enough “real talk” going on? Health advocate Carly who blogs at ChroniCarly explores that question in her latest post. What do you […]

  8. Gary says:

    I don’t think it’s a “false positivity.”

    And I think it’s kind of a smear to characterize it as such. My 23 years with T1D has had it’s ups and downs. I went and graduated from graduate school, got married, had children.

    Has it all been “unicorns and roses?” No way. But life for T1Ds is a lot better than it used to be. And we can’t change much, but we can always change our attitude.

    And life goes on. Really, how many of us who are sick think about all those suffering in the hospitals we pass by each day on our way to work, school,…life?

    Maybe some. Sometimes I do, sometimes I don’t. Maybe we all could be a little more sympathetic.

  9. Katy says:

    I think this is so right on.

    I found my own blog to be so overwhelmingly filled with despair and annoyance that I forced myself to periodically post Good Things. It’s quite a reach. Things like “this gluten free cracker is not disgusting” or “I slept through the night,” or whatever make the cut.

    Not becoming a shut in IS an achievement! For sure.

  10. Lanie Adamson says:

    Yes, we need real talk on chronic illnesses. I have Parkinson disease and I just published my autobiography. I wrote about the reality of my daily life and the pain of the loss of independence. If a chronic disease is gangs of fun or a source of inspiration, that’s wonderful, but it is not the whole story. Patients need to know the truth.
    My autobiography is at: http://issuu.com/postscripts/docs/v4n26

  11. Rose Edward says:

    Thank you for putting into words that attitude which drives me to distraction. I try to fundraise for JDRF but it makes me feel like I’m a dental surgeon. I’m tired of pulling teeth when kids are dying on the one hand and being touted as climbing f’ing mountains on the other. :(

    • Carly says:

      Thanks for reading, Rose. I wish it were easier for advocates to get more support. It’s a great thing you are doing, helping a lot of people and hopefully funding research for a cure!