All Posts Tagged ‘M.E.

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Mandated Empathy Makes Me Sick(er)

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To my fellow members of the chronic illness community,

As illustrated by our collective Twitter, Pinterest, Instagram and Facebook posts, an overwhelming amount of us devote considerable time each day to criticizing the healthy.  We’re offended when our healthful counterparts don’t anticipate our needs, we’re insulted when they ask the wrong questions, we sneer when they aren’t well-versed in Spoon Theory, we’re scornful when they invite us to participate, and then after all that, we resent it when we feel left out.  None of us are benefiting from this current communications approach.

In the first place, isn’t empathy that is mandated heading towards oxymoron-land?  Empathy should be a kindness voluntarily extended over time, not obligatory platitudes resulting from the quotes we keep posting on Facebook.  Let’s take a break from “TWELVE THINGS YOU SHOULD ALWAYS SAY TO A PERSON WITH CHRONIC ILLNESS” lists.  (I’d like to know the success rate of such postings.  Are your friends going in order down the list or are they free-styling?  If they’re leaving in a hurry, can they comfort you Chinese takeout style and just shout “Oh right, #3 and #7!  See you tomorrow!”)

We want someone’s compassion towards us to be genuine and of their own volition.  I myself was elated the day my veterinarian called in the rest of the office staff to ooh and ahh over our new cat.  It was definitely insinuated that this particular feline was their new favorite.   When the same thing happened with my next cat, I was on Cloud Nine and logically concluded that I must be The Best Cat Adopter Ever.  Well, eventually I found out that all new pets get the same amount of fuss; it’s like company policy or something.  The cats took this revelation pretty well.  I, however, was utterly crushed.  Mandated affection just doesn’t feel as affectionate.

What’s most damaging about the negativity of these posts is not to our group image but to ourselves on a personal level.  Maintaining an identity separate from that of “patient” and nourishing connections with people who aren’t sick can be challenging but it is vital if we want to thrive in spite of a chronic illness.  Despite what we tell ourselves, continually posting these collective gripes is NOT healthy venting, it’s NOT social bonding, and it’s NOT raising awareness.  It’s an “us versus them” mindset.

So I say, let’s resist Pinterest Pins featuring a lonely planet in a dark sky with the despondent message, Healthy people will never understand the burden of illness.  When illness is isolating enough already, why throw down negative borders separating us further from the rest of the world?  Jedi Knights bear a lonely burden, but they don’t go around the universe bellyache-ing about how no one understands them, now do they? (#iHeartRey)

Now before you start composing a nasty comment about what an insensitive traitor I am, let me be clear:  I absolutely believe that as chronic illness survivors, we deserve the most level playing field possible, at work, at school, at home.  To get this equity, we often have to speak up.  But making oneself heard with a direct request (I will need a specific style of office chair please; Occasionally I may need an extension on term papers; Someone else better carry this #$&!ing laundry basket upstairs…) is wholly different than complaining passive aggressively on social media.

We survive the hell of chronic illness every day – we should show (not tell) people that we’re the toughest in society, not the whiniest.  We may be trapped in these dysfunctional bodies but we shouldn’t be confining ourselves, socially and mentally, to resentful casualties.  Like yours, my illness involves pain, exhaustion, embarrassment, and disappointment but I’ll be damned if I allow it to breed grudges when I could use it to generate strength, practicality, and thick skin.

Sincerely,

AshleyJane K. Boots

Chronic Illness Comrade

AshleyJane K. Boots is living with the complications of Lupus and Fibromyalgia.  She lives a colorful life in Concord, NH with her husband and his extra-ordinary teenage daughter.  AshleyJane blogs at www.LivingIncurably.com 

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Sliding

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This past Saturday I had a lot of fun being a viewer and speaker at Crystal Saltrelli’s Living (Well!) with Gastroparesis: The Coping, Stress and Anxiety Online Summit.  I thought I’d share a few of my slides on the blog today, and I just got an email from Crystal about posting all of them over on her web site for any interested parties.  I’ll let you know when that happens.  For now, here’s three of my favorites. Screen Shot 2015-09-29 at 3.16.29 PM Screen Shot 2015-09-29 at 3.17.20 PM Screen Shot 2015-09-29 at 3.18.34 PM

Have a good rest of your week!

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My Guest Post on the blog, “Counting My Spoons”

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The lovely Julie Ryan is hosting a guest post of mine over at her blog, Counting My Spoons.  Click here or on the image below to read the post entitled, “Making It Work: Chronic Illness and Fashion.”  

Would you indulge me in something?  I think it would be so fun if everyone posted a picture of themselves wearing their own favorite outfit – either tweet it and tag me @LivingIncurably, Instagram it and tag me @LivingIncurably or post it on my Facebook Page   Can’t wait to see you and your fashion!

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Living Incurably on Instagram

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Living Incurably is now on Instagram! There will be some crossover with the blog, but also some original content as well. I hope to see you there and follow you in return!

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Follow this link to Living Incurably’s Instagram page.  Here’s a photo that wouldn’t normally be on the blog but would be on Instagram.  Click to read the caption and read the (short) story behind the photo.

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Organized Bohemian

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The house we live in has “character” or is…how to say, a little….ramshackle in places, and while I do love clean uncluttered space, minimalist decorating here at Chez Boots only accentuates the plentiful cracks, tilts and gaps.  So I’ve been slowly decorating with a theme I have come to call, “Organized Bohemian.”  “Bohemian” in the sense of artsy and colorful (distracting ones eyes from the cracks, tilts and gaps) and “organized” in the sense of sending a clear message that this is not in fact a hippie commune.

The bedroom has been my latest focus, where I ditched an enormously wide falling-apart bed frame, and bohemed it up with a drapy canopy and a luscious amount of colorful throw pillows.  Voila. We’ve got a romantic and comforting artsy little nest.  When my Venn Diagram dictates an afternoon in bed, I feel quite luxurious laying there.  And so does Midge.

 

Duvet cover by Target.  Sponge-painted walls by us, paint from Lowes.  Art by Christopher.  Throw pillows from Marshall’s.  Canopy from Amazon.  Scarf atop canopy a brilliant find at our local Rite Aid.  Cracks in the walls and tilted floor by Father Time & Mother Nature.

How could you make your Venn Diagram dictated resting spot more enjoyable for yourself?

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In a Venn Diagram kinda way…

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When I’m asked, or in places such as my little book or the “About” section of this blog, I tend to describe my health  as “3 illnesses overlapping in a Venn Diagram kinda way.”  While visiting with Julie (of the blog Counting My Spoons) over email we talked about actually putting our diagrams down on paper.  This morning I dragged this dusty pad of paper out from under a bed and made it happen.

Ten years into chronic illness, it was an interesting exercise for me, and I think it could be really useful for someone in the early years of their illness.  My imaginary dream doctor would assign this as homework and then discuss it with me at the next appointment.  And then they’d reward me with a massage gift certificate.  Somehow I doubt Medicare would cover such luxurious and obliging medical attention.  In the mean time, I will be my own health advocate, treatment coordinator and medical detective – roles most of us have learned to play out of necessity.

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Don’t wait around for your imaginary dream doctor – get your symptoms as organized as you can.  You’ll be equipped to ask better questions and make better treatment plans. But then tuck it all in a drawer and put it out of your mind – your symptoms are just that  – they’re not you.

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A calm, well-argued opinion piece

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Follow this link or click on the image below to read a succinct, calm and well-argued opinion piece by Donald Unger in the Boston Globe.   I had the pleasure of briefly meeting Mr. Unger earlier this year at NH Arthritis Foundation event, and within 5 minutes he kindly offered up a Fibromyalgia doctor recommendation and also told me about the US Pain Foundation.  He strikes me as a great example of living incurably –  he didn’t shift the conversation towards his own health once, indeed I had no idea he was a pain patient himself until I read this article. {2/14 Redaction: Donald Unger was NOT the man I briefly talked with at the NH Arthritis Foundation event.  I have never met Donald Unger and have no idea why my foggy brain insisted with such clarity that he was.  My apologies.}    If you approve, share it via social media – I think it’s such a reasonable argument that it could even sway people who are close-minded about pain management.  Bravo.

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…and happy snow day to New Englanders today.

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