Unstoppable, award-winning advocate since 2013, Charis Hill (they/them) is a disability activist, writer, speaker and model living with Axial Spondyloarthritis (axSpA), Ehlers Danlos Syndrome (EDS), Major Depressive Disorder, Anxiety and Post-Traumatic Stress Disorder, among others. Charis’ multi-tiered work uses narrative engagement to advance social justice for multiply-marginalized disabled people.
Charis’ story has been featured in dozens of publications and media outlets including NPR, Business Insider, Kaiser Health News, WebMD, Mother Jones, the Associated Press, and in the documentary film Becoming Incurable. They have spoken at numerous events including the Sacramento Changemakers TEDx series (2017); the Sacramento Women’s March (2018 & 2020), the Health Advocacy Summit (California, 2019), Galvanize CA by The United State of Women (2019), Broome Library Monthly Recognition Series Autism Month Lecture (2021) and on healthcare panels, press conferences, in legislative hearings, and with members of Congress on Capitol Hill.
In addition to speaking at marches and conferences about ableism and healthcare, Charis regularly assists with translating medical studies and guidelines into plain language documents, conducting patient-centered rheumatological research, forming international criteria for disease treatment outcomes, developing Continuing Medical Education (CME) courses, and creating medical research guidelines. They are consistently involved in national/international advocacy, awareness, and legislative campaigns to improve spondylitis and disability education, funding, and access to treatment. In 2021, Charis worked with Congresswoman Doris Matsui and the Spondylitis Association of America to introduce H. Res. 135 which, if passed, will declare May ‘Spondyloarthritis Awareness Month’.
Charis has modeled in Los Angeles Style Fashion Week and New York Fashion Week and has been featured on the cover of Féroce magazine, Arthritis Today, Spondylitis Plus magazine, and in numerous Sacramento-based magazines.
In 2014 Charis was awarded the Progress in Policy Award by the Arthritis Foundation, Pacific Region for efforts in statewide and national legislative advocacy efforts; and in 2021 recognized as Advocacy Volunteer of the Year by the Spondylitis Association of America (SAA). They are a board member of Resources for Independent Living (RIL) Sacramento, a member of the SAA advocacy committee, a member of the CreakyJoints/Global Healthy Living Foundation (GHLF) Patient Council and COVID-19 Patient Leadership Council, and a member of the Community Council for the National Pain Advocacy Center (NPAC). Charis writes for various media outlets; with bylines on HealthCentral, Healthline, Business Insider AnkylosingSpondylitis.net, and This AS Life; including cover stories for Arthritis Today and Spondylitis Plus magazine.
Charis graduated in 2009 from Meredith College, magna cum laude, with a BA in Sociology and minors in Psychology and Women’s Studies. When able, they enjoy sewing, cooking, gardening, thrift store shopping, and loving two very furry Maine-coon cats (Juno and Jujoon) and one fluffy part-Ragdoll cat (Madge).
Charis is available for speaking engagements, awareness campaigns, press inquiries, and more.
Reach by email: Charis.Anna.Hill [at] gmail.com
Connect on social media: Twitter | Instagram
To see Charis in the news, check out the News & Media Mentions page.
BeingCharis 
Hello, I really appreciate that this blog exists and the work you are doing around AS. My late father, a refugee from China, had AS and dealt with atrocious experiences from the medical community and the community in the US. It has been very difficult to tell those stories (as many people like to categorize things to either a racism or ablism but never both) and tell of how he was called a monkey to his face, denied accomodations in the hospital (he was once shoved into an MRI since his spine was curve so much that he started having seizures), and wrote off as worthless and inhuman by family and friends. I have countless stories but am not sure how to share them with others, and your writing gives me hope that people will listen. I know that I’ve inherited the gene to carry AS but have not been given the official diagnosis of having it. I am thankful there are advocates like you that are fighting for better care and awareness so no one will have to endure what our ancestors faced and breaking the cycle of trauma it created.
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Hi Tony, thank you for sharing this about your late father. I am so sorry he had those experiences, as well as how they impacted you. I wish I could say I’m surprised by the blatant racism and xenophobia. Thank you for your comment, and I look forward to reading your stories of him someday! – C
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Heyooo !! 😀
I came across your blog from reading a response letter while ironically typing one for myself. I was absorbed by your blog and I appreciated how accurately you described the difficulties that us disabled people have to endure every day. I suffer from Ankylosing Spondylitis, Anxiety and depression, Fibro, chronic fatigue and so on. If our bodies were made by manufactures, I think we would have the same one. I have a lot of symptoms that bed ridden me and Ive spent the last 5 years sorting them into diagnosis so I can apply for Disability Your blogs are a great help and deeply appreciate the awareness you raised and efforts you have done despite suffering with so many conditions.
P.S.I left my email and I wanted to see if you can help me with my disability letter. I dont have the writer’s gift like you do and cant describe my conditions as well as you do. If not, its a big deal your blogs are godsent anyways.
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Hi Anthony,
Best of luck with your response letter! The best advice I can give is to tell your story from the heart, no one can tell it for you. It doesn’t have to be written like you’re a writer – because you aren’t one! Just tell them the ways your diagnoses have limited your ability to do basic tasks.
Keep me posted!
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Hello to everyone with Ankylosing Spondylitis. I was diagnosed with AS when I was in my 20s. I really enjoy reading the messages. I didn’t realize how much AS has affected so many lives. I’m going to follow you on social media but don’t know which one yet. I struggle off and on with depression about the AS because I know a lot of people stare me down when I go to a store or anywhere. I am trying to keep a good attitude but it’s really hard. I’m glad I found this site.
Darla
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Darla, thank you for your comment! AS is indeed a pervasive disease, individually and worldwide. We will be *seen* one day for what we live with, if I have anything to do with it!
I look forward to hearing more about your story sometime!
– Charis
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I have a serious question. I was diagnosed with ankylosing spondylitus in March of this yesr. I also have sero negative rheumatoid arthritis. I would like to be involved and participate in the jingle bell run for arthritis but can’t walk that far. To participate I would need to use my motorized chair. I feel like it would be frouned upon that I am not doing what I am supposed to do if I don’t walk. I guess it’s pretty bad when you don’t feel like you fit in with the people your supposed to fit in with.
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Hi Tony! Yikes, that does sound like a dilemma. I’m not sure what your question is, but it sounds like you’re asking for input on this. I have witnessed some Arthritis Foundation walks to be a bit challenging for people to navigate using mobility accessories like walkers, wheelchairs, and scooters because the Foundation chose a location that wasn’t suited for people with mobility impairments (I do see the irony in that!). At the same time, I’ve been to these walks and have seen and shared time with plenty of people who showed up with their canes, walkers, chairs, and scooters to open arms. I hope you’ll make the decision to go to the “walks” – I have a feeling you and your chair would be more than welcome. For me, when I began using a wheelchair it was an internal battle over whether I would feel accepted. It didn’t take long for me to really love my chair because it allowed me to participate in activities (like the Arthritis Walk), whereas otherwise I would have just stayed home. My chair is my freedom to be social again! Let me know what you decide!
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Because of indecision on my part and waiting to hear from the local organization I missed the race this year. I will definitely take part next year.
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That’s great to know!!!!
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Charis,
Thank you for being a voice. Many have no idea what AS is and how it can affect a person. I was diagnosed at 19 and doctors thought that it was all in my head, I found it very frustrating as well as unfair. I played sports growing up and was very active. To have been diagnosed with this freaked me out. But each day is a new day and I will not let this overcome me. In the last two months my 7 year old son was also diagnosed with this. It’s been very hard for him recently and we are trying to find ways for him to understand while staying strong. This has been very hard for him, breaks my heart. Once again I want to thank you for your voice and words of encouragement.
Thank you,
Haley Hale
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Haley, I’m so sorry you and your son are going through this. Do you have good support in-person or online?
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Currently we have a lot of family and our rheumatologist. But I haven’t really found anything online yet. My mother tagged me on an article about you the other day.
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The Spondylitis Association of America is a great resource and has support groups (USA) on their site in addition to reliable information. Spondylitis.org. There are also a lot of private groups on Facebook for people with AS/SpA.
I hope you are able to find both informational and emotional/community support soon!
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Hi Charis!
Just wanna say thank you for your work with making AS more ‘visible’. I’m from Sweden, I was diagnosed 18 months ago and I recently found out about you 💕❤.
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Thanks for you comment, Eva! I’m so sorry you were diagnosed, but glad you are finding you aren’t alone.
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Chris,
I’m not sure if I am doing this right but I wanted to thank you for your articles. I am newly diagnosed with AS. At first I thought it would just be a mild discomfort but some days I can’t walk. It’s terrifying. I rode in the MS-150 two years ago and now I can barely make it upstairs some days. Assist walking devices and a wheelchair felt like the end of trying and giving up but after reading your article I’m considering using them without feeling embarrassed. I hope you have a pain better day. Thanks again James
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Hi James. Yes, you did it correctly! Bravo. I’m so glad you shared a little bit of your own story here. I’m so sorry you are struggling so much with AS and that it has affected you so heavily and quickly. Please keep me posted on how you continue to adapt to those assistive devices, both physically and emotionally. I think we all go through that phase where we feel we’re losing more by using the darn things, but then eventually we can get to the point where we realize how much more they allow us to live! I do hope to hear more from you soon. Take care,
Charis
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Thank you.
And I am a 66 yr old woman w/ AS.
I wish you were my doctor! 😎
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Aww, thank you!
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Charis – I loved reading your blog about AS. I was diagnosed with it 30 years ago and never read such an accurate description of what it is like to have AS and you described my symptoms and pain remarkedly on point. I appreciate all that you go through on a daily basis as you could have interchanged our names and it would be the same story. I would love to hear from you and more about your life and how you deal with it. I also have fibromyalgia, herniated discs, chronic pain syndrome and so on. I am 61, forced to retire from Disneyland and live in Southern California mountains in a cabin with my husband, two dogs and one cat. Write me back if you want as I would enjoy getting acquainted. Karen Anderson
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Hi Karen! I’m so glad so much of this blog resonates with you. It’s always humbling to hear that so many people can relate to the same experiences. I hope to keep writing enough so that you can, indeed, learn more about how I manage and live with AS! Have you heard about the Spondylitis Association of America support groups? They are all led by people living with some form of Spondylitis. There is one in Van Nuys, perhaps it would be close enough for you to visit! You can learn more here: http://www.spondylitis.org/Community/Support-Groups
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Hi… very interested/intrigued by the story about Walmart leaving Oriental. I’m a retired NC native living in Rocky Mount, NC. Spent a fair amount of time in Oriental in the past when I was an avid sailor and fell in love with Oriental . I spent 30 years in the newspaper business and am very familiar with Walmart’s tactics. The newspapers I managed wrote a number of editorials trying to inform residents of small towns regarding welcoming a Walmart store to their community.
For what it’s worth… I’d be very interested in helping the family that owned the grocery store in any way should they decide to reopen…. as well as the town with media concerns.
Sincerely,
Marvin Pike
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