All Posts Tagged ‘pain


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 


1st Impression of AlignMed vest: Kinesio tape meets apparel line


A few years ago I had a physical therapist who, after our heated pool therapy, would apply Kinesio Tape to my shoulders in an effort to (as I understand it) stimulate better posture within painful muscles and to keep my shoulder blades from “winging out,” a phenomenon that results from pain, worsens said pain.  See this photo from a few years ago where my hot pink Kinesio tape was caught by the camera at a birthday party:


I was surprised that I liked the tape. Considering how achy and tender my shoulders are, and that something like a bra strap often feels akin to torture, I was surprised that the tape not was not painful but actually seemed to help prevent spasms.  Unfortunately the taping ended when the physical therapy ended, and that was that.

A few weeks ago when I received a fabulously free box of AlignMed Products, Christopher noticed that the literature mentioned Kinesio Tape when explaining the similarly therapeutic “NeuroBands” within AlignMed’s garments. That was a hopeful thing to hear, because, despite the excitement of getting to try new products out for free, I was a little nervous that they would just be really tight shirts that made the pain from a bra strap feel like a walk in the park.  (I’m thinking that saying was not coined by someone who had Lupus.  I guess the Lupus version would be a very small, dark park.)

So since I got home last weekend from a visit to Washington, DC I have worn the AlignMed SpinalQ vest twice for a period of one hour each time (recommended use in the beginning).  I wore it for two activities where I typically end up having especially bad posture – typing and riding my exercise bike. See me in the vest here:


As you can see from the picture, this product is so NOT related to the nonsense product being endorsed by the Kardashians lately.  It’s like 2015 vs. 1817.

Initial observations: Wearing the vest did feel similar to wearing  my PT Kinesio tape, a gentle but firm, constant lift and hold. Having proper posture for an hour of the day felt good, both physically and mentally.  After a larger, more scientific-sized sample of sessions and observations, I will report back.

I hope your week starts off on a good note.



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



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!




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!


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.




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?