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#sickbody, Advocacy, ankylosing spondylitis, Charis, chronic disease, chronic pain, disability, Patient Advocacy

Patient Advocacy & Courage; Becoming a Voice For Many

November 6, 2015 BeingCharis 6 Comments

Do you know how much courage it takes to tell 200 strangers it hurts to have sex? Courage.

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#Rheumers #sickbody #sponsor American College of Rheumatology ankylosing spondylitis BeingCharis Big Pharma But you don't look sick novartis San Francisco spondylitis association of america This AS Life

a voice for many

About Charis

Charis is a disabled car-free queer writer, Episcopal goofball, professional model and Burner. She lives with Ankylosing Spondylitis, Major Depressive Disorder, Post-Traumatic Stress Disorder, and two furry Maine Coon mixed cats. Click the picture to learn more.

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Yesterday I barely ate because of gastro problems. I was between the bed and bathroom most of the day, then performed normalcy the whole evening with a cramping stomach, hungry and dizzy. I pushed so hard to perform, to be out in the world last night because - ironically - I wanted to be present for a documentary premiere. A documentary that tells my story and two others' stories about living with incurable diseases. I pushed hard to suck up the medication side effects (those gastro things) and chewed on crackers through the movie, smiled too big, talked to too many people, posed for too many pictures, pretended my body was OK with me pushing it so hard. I stayed out too late to celebrate, desperately wanting to feel human for my special night. I pushed too hard and I knew it meant I would be in bad shape for days or weeks afterwards. This was today. Headachey, fatigued beyond understanding, eyes burning from sleeping with makeup on. I showered today and that was my biggest accomplishment. I think I watched a whole season of Supergirl on Netflix. I am not sharing this for pity, but for truth. I have made a choice to live, not just survive, even when I know the days-after will always look like this. I am sharing because I am a proudly disabled person who has chosen to show my truth so the world can be better for the generations of disabled people coming behind me. #beingcharis #ankylosingspondylitis #spondy #spondylitis #arthritis #chroniclife #chroniccharis #chronicdisease #sickAF #disability #advocate #incurable #chronic #chronicillness #becomingincurable #incurablefilm

Last night. Let me tell you about last night. People packed The Guild Theater. I watched myself and two close friends on a big movie screen. Strangers watched us on a big movie screen! And it was so awesome. Becoming Incurable is a great movie by a great filmmaker and I hope you get to see it, too. If you want to host a screening or learn about screenings, go to BecomingIncurable.com and sign up for the email list for updates. #beingcharis #ankylosingspondylitis #spondy #spondylitis #arthritis #chroniclife #chroniccharis #chronicdisease #sickAF #disability #advocate #incurable #becomingincurable #incurablefilm #invisibledisease #incurable

To the person who sent me the Peet's gift card years ago, thanks for the mocha today! #peetscoffee #disabledpeoplearehot #disabled #beingcharis #invisibledisability #invisibledisease #invisibleillness #chroniclife #chroniccharis #chronicdisease #sickAF #disability #advocate #incurable

I interviewed Dan Reynolds of Imagine Dragons recently. You can read the full article on BeingCharis.com. #ankylosingspondylitis #spondy #spondylitis #DanReynolds #ImagineDragons #arthritis #chroniclife #chroniccharis #chronicdisease #sickAF #invisibledisability #invisibledisease #MonsterPain #PainInTheAss #MonsterPainInTheAS #celebrityinterview

I'm OK with this being my no-running-water-backyard-solar-shower scene. Don't mind the sheets, they're to help make sure the neighbors don't see me when I'm bathing. Btw, it was only 105 degrees today. #sacramento #california #sunset #SacramentoSunset #beingcharis #backyard #Homeowner #backyardshower

Hey #Ableism, you suck. Picture 1: waiting in line for beer at #SacPride. See that curb at my feet? See the legs of the people in front of me? The vending table for beer is about 3 feet into the grass, on top of the curb. There was no curb cut for me to access the beer table independently from my wheelchair. I had to trust complete strangers to a) be honest with my drink tickets and get my beer for me since I couldn't reach the table and b) not drug my beer before handing it to me, because I couldn't see the transaction happening. It was humiliating and a very alarming safety issue. Image 2: this was my view of the Pride parade. A friend and I set up our chairs (me in a wheelchair) by the curb, just barely in the street. Ambulatory viewers kept creeping out into the street until they were completely blocking our view. When I told them I couldn't see (multiple times to multiple people) they inched to the left, further blocking my view, as if it was fine that I couldn't read any of the banners as each contingent approached. They dug in their heels when an abled ally tried to get them to move and blamed *me* for not wanting to see badly enough because I wouldn't move my chair out into the street next to them (hence blocking the people beside me). Pride is organized by the Sacramento LGBT Center. #MakePrideAccessible #sacpride2019 #pride #pridemonth #disability #disabled #accessibility #suckitableism #cripthevote #sacramento #beingcharis #queer #lgbt #disabledrights

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