Tiara's Tuesday Talk – Tell Everyone!

Tiara’s Tuesday Talk – by Sara Sheibley

in·vis·i·ble  /inˈvizəbəl/ Adjective: Unable to be seen; not visible to the eye.

(Pretty easy to understand right?)
Here is a picture of me being invisible.
Pretty huh?
In all seriousness, we hear over and over again about invisible illness. We have them. We deal with the fall out of these invisible illnesses. There are articles out there everywhere discussing not only the illnesses themselves but the ramifications of having them. Ricky White did an excellent one on his blog http://endlesstrax.com/2013/03/22/invisible-illness/.  From our families to our friends to co-workers, strangers in the grocery store, that old couple at the mall who berated me for taking a closer parking spot and making them park farther away…
We’ve all been there. The guilt over sitting on the couch on a sunny afternoon instead of working on the (yard, laundry, cleaning, bills), becomes a battle. So many times we have to turn down invitations to go places and do things because our “illness” won’t let us. “Oh you’re too sick?” as they think, “Why am I not surprised?” and the invitations get fewer and our social lives go to pot.
I think as people become more educated about these illnesses, they become more understanding. This is one of the reasons we are walking, to spread awareness about Ankylosing Spondylitis and the people who have it. Social media has also made it easier to learn about AS and let me say, Walk Your AS Off 2013 is all over the social media map! Our vigilant leader, (while trying to sell a house, move, fix plumbing, design shirts, tweet, facebook and all kinds of other stuff) has really worked tirelessly to make sure we are OUT THERE!
But is it enough? Do we wear a sign around our necks? Do you wear your wristbands, STAND TALL
or I Am The Face Of Ankylosing Spondylitis?
Is it enough? How do we get this message across? By talking. Tell people. Don’t be shy. I tell everyone. I also like to bore them with all my health issues but hey, I’m a line talker. You know that person who gets in line at the grocery store then wants to TALK to you? I could probably talk to a post if I thought it would listen…
That’s another fine idea. Start a blog, invite your friends and family to read it. Start that second blog where you can complain about the friends and family who read the first one. Just kidding… I think. You don’t have to be some master wordsmith or write beautifully insightful pieces. You just communicate how you feel, how your day is, what’s going on in your life and your body.
World AS Day, Walk Your AS Off, become a face http://thefacesofankylosingspondylitis.com/a-face-your-face-is-wanted-information-here/
Buy some apples from Jenna http://thefeedingedge.com/2013/03/it-is-what-it-is-invisible/ – by the way, that’s a picture of Jenna being invisible there too along with her inspiring and beautiful article.  Join the Spondylitis Association of America http://www.spondylitis.org/main.aspx Buy shirts from the walk and wear them! Here is one, and all proceeds got to next year’s walk! http://www.zazzle.com/i_walked_the_walk_for_tee_shirts-235804061340728451 Tattoo it on your body. Ok that one is extreme but… there are shirts, buttons, key chains, shot glasses (I need a set of those), purses…
There are so many ways to put yourself out there and say it. I HAVE AS. Make a note, pin it to your jacket or shirt. Most importantly, accept yourself for who you are, what you have and what you can and can’t do. That’s the hard part. I struggle with this all the time. My mind says, “you can do this” but my back and hips say, “Are you freaking nuts?” Of course I listen to my head which gets me in trouble with my back.
I’m just saying that there are ways we can all make it so we are not so invisible anymore… Like me.
Yes this is me and yes I have a fauxhawk in my hair. My son asked me to do it so I did…
Sara Sheibley is a wife and mother of four.  Through out most of her life she has dealt with chronic illness. Born with small fiber axonal polyneuropathy, she had aches and pains early on but wasn’t diagnosed with AS until 2008. Since then she has had to champion her own cause after she developed hemalytic anemia from treatments. Although she suffers with more than just AS, she feels that this is her primary illness and wants to be active in helping the cause. Sara & her Tiara’s Tuesday Talk will discuss a myriad of topics from assistive devices to walking help when you have other illnesses to consider.

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