Photo Credit Erich Weldon/Thomas Chancey Studios 2017
Ankylosing Spondylitis (AS) and PTSD, Anxiety, Major Depressive Disorder. I was diagnosed with AS at age 26 in 2013 but my symptoms began around year 2000. Back then it was a “man’s disease,” so I was encouraged to blame my symptoms on sports injuries and deal with it. My story to final diagnosis involved my estranged father, a faux heart attack, and a fight for healthcare.
Bio (Who are you? What do you do? Tell me about yourself):
I am a writer, speaker, model, Episcopalian, queer, goofball, and a burner, but not necessarily in that order. I have a BA in Sociology, I am a former college athlete (soccer), and I carry on intelligent conversations with my two cats. My mission in life is to make Ankylosing Spondylitis a household name.
Is there anything that helps you rise above your condition? (Include anything that has worked for you. Examples: conventional medication, supplements, alternative treatments, diet, your faith, religion, healers, spirituality, exercise. Please also include any advice, tips or tricks you may have)
I can’t claim to rise above my diseases every day; many days they are pretty effective at rising above me! I am still adjusting to life in a body I never imagined would be less-than-able at the same time that I am adjusting to a career I didn’t choose: that of being a professional patient. There are a few things that help me cope a little better: saying yes to help, writing (finding that creative escape!), taking pain medication when I need it, trying different medications, moist heat, therapy, and my one regular outing each week: church. It also helps to have something in the not-too-distant future on my calendar to look forward to.
What does life look like at its best with your condition? (Describe what a good day looks like)
Ankylosing spondylitis affects every single person differently in terms of severity and how people react to different treatments. For me, a really good day includes sleeping all night without being awakened by pain or nightmares, getting more chores done than yesterday without collapsing, maybe working on a blog post, and perhaps a dinner or drink out with a friend (yikes, that day exhausts me just thinking about it). For me, my future would look its best if I was financially stable, with quality medical treatment and healthcare, more low-pain days than high-pain days, and a stable roof over my head with space to write. It is also one of my fantasies to be able to run again regularly.
What challenges have you faced in regards to your specific situation?
One of the most difficult days of my life was the day I accepted I could no longer work to sustain myself. I am currently waiting for a hearing (February 2018) for my federal disability case. I am super stubborn in my desire for independence, so the loss of the ability to support myself has broken me in a lot of ways, especially my self-esteem. Logistically, I’ve faced a lot of barriers to healthcare and appropriate treatments that are best for managing my AS.
They say our life experiences shape who we are. How has your condition molded you into the person you are today? How has it inspired you and what strengths have you gained from your health journey?
If I was never diagnosed with AS I don’t think I would have dusted off my love of writing and turned it into a tool for advocacy and information-sharing. I also doubt that I would have grown to be a confident public speaker and interviewee for news stories. I was always an advocate for others, but AS taught me how to be an advocate for myself and in turn groomed me to be a much more authentic spokesperson and storyteller. One of the biggest things I’ve learned is that no one can tell my story for me and that every experience can be turned into a compelling narrative to raise awareness. Finally, I believe that living life with such a horrific disease has helped me listen better on “both” sides of the fence – the side I left (the healthy side) and the side I am on now (the sick side). I try to find common ground so we can learn from each other.
What is the one life motto or mantra that helps you to keep fighting/going on your condition and why?
A repeating theme in my advocacy work that has been with me from the start is; “No one can tell your story better than you.”
Want to see more of Charis?
Check out her blog: BeingCharis.com