Instead of answering one of your AWAP* Wednesday questions today, I want to offer a little PSA and a call-to-action. It’s about the value and necessity of respect for others in our chronic illness community:
*AWAP = As Well As Possible
Now it’s your turn:
Thanks for listening today, babes. Thanks for speaking up. If you’re with me on this, I would love to hear your thoughts in the comments below. Heck, even if you’re NOT with me, I would still love to hear your thoughts… we don’t have to always agree to respect each other.
Next week, I’ll get back to answering AWAP Wednesday questions.
Want to watch more videos like this? Check out our AWAP Wednesday video playlist, which has more than six hours of guidance, advice, and bloopers.
Is there a question I can answer for YOU? Add it to the comments below, or shoot me an email.
Until we meet again: Be AWAP! Smooches!
A funny thing happened to me recently. I met another woman with invisible chronic illness, one that—like fibromyalgia—is often called into question by non-sick folks and even medical professionals. We were having a pleasant conversation, and I was enjoying the fellowship of another ChronicBabe.
Then she said something that shocked me: “I’m surprised you have fibromyalgia! I would never have guessed that from the way you look.”
I almost snarfed my tea. After a moment, I regained my composure. “Well, isn’t that the reason we do the advocacy work we do? Because so many of us have invisible chronic illness and can’t get the respect we need and deserve?”
But you don’t look sick.
She said the one thing I would NEVER expect another person with invisible illness to say: But you don’t look sick.
I haven’t been able to stop thinking about this interaction. It’s been my assumption for many years now that all of us within the invisible illness community understand and respect each other for sharing this same experience. Since I first got sick almost 20 years ago, I’ve heard variations on but you don’t look sick from tons of people—but almost never from another person with invisible illness.
The idea that we have to look sick to be sick is wrong.
This idea keeps thousands upon thousands of sick folk from getting the respect they need and deserve from friends, family, co-workers and others.
Often, this idea keeps us from getting the medical care we need and deserve from otherwise well-meaning health care providers, who for whatever reason can’t discern or believe the intensity of our pain and other symptoms that don’t present visually.
Respect each other.
All of us within the invisible illness community—and there are over 100 million of us throughout the U.S. alone!—must work to stop this cycle. We must reserve our strength, because we need it to explain our experience to other people outside of our immediate community of sickos.
The last thing we should be doing is using precious time and energy trying to get other sick folk to validate our experience.
I refuse to make myself “look” sick in order to get validation.
Just because I look bright-eyed and cheery doesn’t mean I’m not hurting. Just because I wear a cute outfit doesn’t mean I’m not feeling anxiety. Just because I’m put together on the outside doesn’t mean I’m not falling apart on the inside.
I refuse to accept that we have to look sick in order to be accepted by society as being sick.
There’s a movement afoot.
I join fellow ChronicBabe friends like Christine Miserandino of But You Don’t Look Sick?, and Karolyn Gehrig, who started the #HospitalGlam movement, in advocating for greater respect and compassion for us all.
Will you join me? Will you get vocal about this? The more we show our beautiful faces, and bodies, and kick-ass fashion sense—while also being clear and explicit about our chronic illness experience—the faster we can shatter this bogus idea that unless it’s visible, it’s not real.
Until we meet again, be AWAP. XO!