Who is this Ania?
My story begins with a creak. That’s a lie of course, my story truly started long before that point, but the creak is an easily identifiable point in time and thus a good starting point. One day my leg, or more specifically my hip, decided to start making noise. What followed was a weekend of extreme pain which led to an eventual diagnosis of Psoriatic Arthritis. A year after my diagnosis my hip was permanently damaged and I had spent several months walking with a cane and in a wheelchair.
After I started being treated for the arthritis with hardcore immunosuppressants, I began experiencing some extreme digestive symptoms. I developed a fistula that required surgery and, in the months that followed, spent hours at the ER. There were entire weeks where I could not keep anything down. At work, I would spend more time in the bathroom than on the sales floor. After two colonoscopies in one month, I was diagnosed with Crohn’s disease: an autoimmune disease that affects the digestive system.
With the development and diagnosis of my illnesses came a drastic change in lifestyle. After growing up in a middle class family, I experienced poverty for the first time. I learned the fear that is not knowing whether I would be able to afford to buy food this month or pay my bills. I experienced the frustration of being discriminated against when applying for jobs, or having to deal with missing too much work due to illness. I had to learn how to advocate for myself in hospitals and accept that even if I did advocate for myself that was no guarantee that I would be believed. I had to deal with unfair assumptions about my abilities related to the fact that I am a disabled person. I had to come to terms with mental disabilities that developed throughout this process, including anxiety and depression. I had to deal with the conflict the medical establishment has between mental and physical disabilities.
Because of what I went through with my leg problem, I had the experience of being both visibly disabled and invisibly disabled. I’ve had to defend my status as someone with a disability and further I have had to deal with the perceptions and stereotypes surrounding disability. My experiences taught me a lot about the importance of intersectionality, of the need for skepticism, and inspired a book which I have written and am now editing called Young, Sick, and Invisible: A Skeptic’s Journey with Chronic Illness.
I hope to bring awareness of what Crohn’s, Psoriatic Arthritis, Ankylosing Spondylitis, ADHD, Depression, and Anxiety are like as disorders, as well as what it means to live with them. I want to explore various ways in which other systems of oppression intersect with disability, and the ways in which accessibility initiatives impact the able-bodied as well. I want to explore poverty dynamics and how they make disability worse in many cases, as well as exploring the ways in which disability can be more likely at lower socioeconomic statuses. Altogether however, what I wish most of all is to bring awareness of disability issues to the public consciousness in the same way that discussions of gender, race, and/or sexual orientation have developed in the last few years.