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Hear, See, Speak no Illness?

hear see speakSo, I’ve been doing this kind of “hoping an epiphany will come hit me like a train” pondering…and I wanted to post about something that’s bothered me from day one of my diagnosis:

Chronically afflicted persons can really muck it up for other chronically afflicted persons trying to advocate for awareness of the issues that chronically afflicted people face.

Clear as mud?

See, thing is…when someone gets diagnosed with something…it’s the “Everything” that will be their world for the next…who knows how long. Forever, maybe? *shrug* So, what you see/hear/read is going to be all of the “Everything”, all of the time.

Posts. Retweets. Likes. Groups. Pinterest. +1’s. Reblogs.

I know this, because I’ve done this.

And? And having been diagnosed with a disease does two things:

1) Gets you hidden from newsfeeds faster than a zombie tracking a brain; and

2) Makes you kind of sad of the loss of friends or support when you’re continuing to do awesome shit.

“What in the blue h-e-double-hockey-sticks are you saying??”

Those groups or folk with chronic illness post memes of “I wish you would accept my new normal” and of health and of their research and of their……………

And, I thought to myself…how many “friends” got tired of watching me post lupus related schizzle, or only came on to FB to see my woes of, “I had to crawl up the stairs again…”…and *TOTALLY* missed out on the:

– I run Kubb Canada with my husband.

– I’m still sitting as President of my Condo Board of Directors.

– I’ve been published in an online report highlighting the empowerment of the patient entitled, “Experts By Experience 2015”. #expertsbyexperience

– I’ve been interviewed. I’ve been sent books to review, because it is known that my followers and readers are of the “Awesome.” variety.

– I still work. I still manage my household with five spawnlings. I still do groceries and I sure as shit still get some scrapbooking and crafting done.

– and…… list continues. It does. And, I’m proud of that list.

And? They miss it. They miss the balance that defines every chronically “afflicted” friend I have. We have good days and we have the less-than-stellar. There’s loathing and there’s #gladitude. There’s fuzzy socks and medications. It’s not all purple painted ponies pooping butterflies jacked up on SugarSmacks, man.

There sure as shit is coffee and chocolate and research and learning and cussing (if it were to be an Olympic sport, I’d win…true story) and anger and resentment.

I wanted to write about this because I’ve got a lil’ confusion…which isn’t all that hard to believe, given my two remaining brain cells, of course…

Why is it okay to post eleventy-billion cat memes and #IWFD (it’s what’s for dinner) Instagrams and passionate photography techniques or dance recitals or whateveritisthatotherpeopledo…but people posting chronic illness memes about how lonely chronic illness is or what you should and shouldn’t say t………OH.

Oh, my.

Do you see it?

Do you post enough balance to remind your friends what it is that really makes you, “You.”?

I came to the understanding a really long time ago that people who do not have a chronic illness have the ability to choose whether or not to support someone who does.

Does it make them sort of an asshole? I kind of think so. But…if I acknowledge that people with strong political/religious postings usually get hidden from my feeds pretty quickly (think of the zombie-brain example)…fair enough to understand that if I’m “All Lupus, All of the Time.”…I sure as shit will be hidden, too.

So? “Colour!” “Cosmos.”


I think as health advocates we really need to take a look at how we’re engaging our readers/followers. If we’re “Whine-1-1” all of the time…do you, then, really blame friends for maybe (totally) taking a pass on your feed?

Whether I was healthy or not…reading headlines of shared posts entitled “What you should never say to a person with ____________” is not my favourite thing to do. Neither is reading posts telling me what I should do or not do as a mother, for example. We beat ourselves up enough, do we not? I’m unclear as to how making our friends feel like a big bag of smashed assholes for things they do or not do will assist in any of our advocating goals. Just sayin’.

There’s a secondary issue here, too: I think we, as chronically afflicted individuals, deserve the ability to post really good things about our really great personalities. I have one. You have one. We all have the ability to choose to find the little things that we may not have otherwise noticed, or to have chosen to adapt and learn and self-improve when we come across a stumbling block (or non-functioning legs that required a Go, Go SpazzyAss crawl up the staircase).

What made me start to ponder? I don’t know, really…maybe it was a headline…maybe it was a meme.

Or, maybe it was hopping on to Twitter to read the last tweet my friend sent three days before she passed away from organ failure from Lupus.

I thought to myself, having posted a typical “less-than-stellar” type of day kind of post, “What will my last tweet read? What would my last status update say?”

As I scrolled down my Twitter feed I read status after status of 140-character lonely/sad/angry/why-don’t-you kinds of posts.

You are worth so much more than lost friendships and broken support systems.

I don’t just think our physicians need to help learn to empower their patients, I think we first need to start with ourselves. Inside. To the soul (not the brain…the brain tries to lie and convince you otherwise, and…to be honest, who would really want to trust zombie hors d’oeuvres?).

THEN, we can empower each other and THEN we take over the world on the physicians and healthcare teams.

This is one of the most popular and frequent memes I see posted: you *show* it?

But…do you *show* it?



Here’s a tricky one…and I hope you’ll answer yourself honestly:

“Do you self-care?”

Not, “Do you make time for…schedule…pencil in…” the time for self-care.


Do you “git ‘er done.”?

Because, if what I’ve seen over the past years have shown me is any indication, only when you start putting yourself first, will you find the balance (body, mind and spirit) to bring balance to the “You.” that you’re wanting people to recognize and acknowledge…chronic illness and all.

There will be less negativity towards those not chronically afflicted. There will be more opportunities to show your support community the ‘you’ that is “You.”

There will…to continue further…be more of the validation we often crave and acknowledgement that, often, keeps us keepin’ on.

You’re worth it. Make sure the rest of the world knows why.

To those I’ve lost along the way?

I’m sorry you missed “Me.” \m/







1 Comment

  1. Mary

    Pattie, loved that I have come across your site. Your musings are so honest and raw and touch on what needs to be said by pained folks to be understood. Keep up the good work. I invite you to visit my site. You can catch my musings. Taking care of self is the best number one pain management strategy. Be well. Mary

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