All Posts Tagged ‘Incurable


Mandated Empathy Makes Me Sick(er)



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.


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 


Instagram inspiration is sometimes what gets me out of bed in the morning

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Earlier this month I wrote this guest post on Julie Ryan’s blog, “Counting My Spoons.”  The topic of my post was Making It Work: Chronic Illness and Fashion.  In my own little way, I discussed anxiety, bras, Mr. Tim Gunn, photosensitivity, scarves, bargain shopping and more.  As a follow-up to that, here’s what fashion has been catching my eye recently.  Lots of them are screen-shots I save on my phone; I like to consult them when I’m feeling uninspired:

Having Fibromyalgia, I’ve been seeking out clothes that don’t impose painful waistbands and snug shoulder seams on my already achy muscles.  Having Lupus and its resulting photosensitivity, I have to seek out clothes that cover as much of my skin as possible.  In the beginning of the illness, I thought that just meant if I was going to the beach for the day.  Now I know I need to be covered even if I’m just going out to run errands.  And I skip the beach entirely.

By following the lovely Instagrammers @hautehijab, @hipsterhijabis and @themodestymovement, I’m starting to see that covered-up does not have to mean frumpy and unstylish.  These ladies, who dress modestly as part of their religious devotion, always look so chic.   I really admire them.  And I’ve noticed that when I try out my own version of these modest outfits, people treat you differently.  Women are friendlier.  And men are much more respectful.  Plus I’d like to think I’m setting a good example for Christopher’s almost-twelve year old daughter.

I’ve always had a thing for scarves.  If you look at my high school pictures, I’m the only one sporting some jaunty little neck scarf. I guess it was my own little trend, one that no one else felt the need to recreate.  Now I’m into long thick scarves, as you can see from the inside clothesline I made in the bedroom:


I hope you get the chance to check out my article.  Even if fashion isn’t your thing, hopefully it will illustrate my point that one little seemingly superficial hobby can be a worthwhile diversion from anxiety over your symptoms, freeing you to have a Living Incurably day.

P.S. Did you know Living Incurably is now Instagram – @LivingIncurably



Living Incurably Compressed, Part II


As I talked about in Part I of this post, my electrophysiologist prescribed compression stockings to help manage the symptoms of POTS.  Basically the stockings are designed to be tight enough that they keep more blood volume in the upper half of my body, thus resulting in less dizziness.

For a few months I wore the full length tights, the ones that cover you from toe to waistband, but I have now moved on to thigh-highs, which are better suited for a tall (5’10”) frame like mine.  They are just wonderful.  A kind of sticky band at the top keeps them in place all day – no slipping down whatsoever, and no painful pinching.  In the picture below, I have the sticky band folded down so you can see it.  When it’s up and in place, the tights are just black all the way up.

Being winter and freezing cold in NH, I’ve been wearing my comfy regular tights from Target over the thigh-high compression stockings.  The thigh-highs on their own would be a bit drafty if you know what I mean!  For winter I’ve been using a thicker opaque material, but come spring I will order some lighter pairs that look more like nylons.

I’ve become a believer in the product, I think they really do work.  And since my thick black winter pair looks pretty much the same as the opaque black tights I’d be wearing anyway, I don’t get that I feel old and sick and frumpy feeling when I wear them.  (The jaunty gentleman on the box doesn’t look like he feels frumpy either.  He looks ready for a day at his Mad Men-esque advertising firm then a wild night on the town involving ladies who are anything but frumpy.)  I’ve been told they have lots of sheer styles for warmer weather, but I’m still a little skeptical about wearing them with shorts in the summer.  I’ll keep you updated.




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


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!




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?