Personal Stories

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.

Ania in a wheelchair being pushed by partner Alex at WiS2Because 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.

 

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Ania Onion Bula

Ania Onion Bula

A student of biomedical sciences, psychology, and English literature. Ania was diagnosed with Psoriatic Arthritis in 2006 which resulted in permanent damage to her hips. In 2008 she was also diagnosed with Crohn's disease, along with anxiety, ADHD, and disability related depression later on. She is finishing up a book called Young, Sick, and Invisible: A Skeptic's Journey with Chronic Illness.

Along with writing, Ania also makes her living by selling her Art under the store name AniaOnion Creations on Etsy. She spends her free time reading, and spending time with her dog, two cats, and three turtles, oh, and her Alex.

3 Comments

  1. March 28, 2015 at 8:42 pm —

    Ania, I have two of the conditions on your list, and I’ve been incorrectly diagnosed with two others. I have life-long ADHD and now have ankylosing spondylitis. I was preliminarily diagnosed with psoriatic arthritis and told by an arrogant ER doc that I had anxiety disorder. When my boyfriend and I both insisted that, though I do have some anxiety related to my ADHD, I did not in fact have an anxiety disorder. The doc wanted to put me on anti-anxiety meds because of my racing heartbeat. To his credit, he went back and checked my medical records and realized that I was on blood pressure medications at levels usually prescribed for heart failure patients. I hadn’t questioned those because I was already on them when I woke up from my six-week coma. Oh, did I leave that out? The coma was triggered by multiple strokes on both sides of my brain from septic shock, which was caused by Legionnaires’ disease, which was, in turn, caused by the prednisone I was taking for the disease I had instead of psoriatic arthritis–dermatomyositis. I had diagnosed my dermatomyositis via Dr. Google, and the rheumatologist I saw thought that I had one of two conditions: psoriatic arthritis or the dermatomyositis I thought I might have. I was actually hoping that she could prove that I didn’t have dermatomyositis. She thought I most likely had psoriatic arthritis, even though it didn’t fit my symptoms as well. I think it was because psoriatic arthritis is more common. Doctors are so trained not to see zebras that they often can’t see them even when they’re looking right at the stripes. She made the mistake of telling me that of the two diseases, she would rather I had psoriatic arthritis, though considering what you’ve gone through, that may come as quite a surprise to you. Unfortunately, she was wrong, and I was right.
    My coma went into remission during my coma, and I’m finally off prednisone (after it caused severe osteoporosis). Of all the scary aspects of dermatomyositis, the one I didn’t know to be worried about was immunosuppression from the prednisone I was taking to treat it!

  2. March 28, 2015 at 10:27 pm —

    Ack, I forgot to mention the rest of the story about the arrogant ICU doc (it was actually the ICU, not ER, another mistake). ADHD! Anyway, after the doc took me off the blood pressure meds, my heart rate started to go down. My blood pressure is now slightly low, like it has been my entire life. At some point during my coma, I probably needed those powerful meds, but they were continued until they started causing some dangerous problems. After I was off the meds, I also found that I was walking better because the meds were causing swelling in my legs that were hampering me during my rehab walks. That arrogant doctor did me a huge favor in the end.

  3. March 28, 2015 at 10:33 pm —

    Plus, I just realized that I said that my coma went into remission during my coma. Uh, I meant my dermatomyositis went into remission. Doh!

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