Stories
Anecdotes and thoughts about life with arthritis and chronic illness
We need to leave behind prejudiced science
Diagnostic criteria put out by medical organizations are supposed to help make diagnosis more straightforward for doctors and patients by defining what the disease is. They should make it easier to study the disease and easier to decide treatment. But what about when those criteria are based on biased assumptions? Research for spondyloarthritis has a history of discrimination affecting women and people of color, and decisions continue to be made from that research. Doctors and researchers need to consider this when making recommendations and designing studies today. Spondyloarthritis Spondyloarthritis (SpA) is a group of autoinflammatory diseases that mostly feature arthritis of the spine which can lead to spinal fusion. The…
I don’t have a diagnosis date
“When were you diagnosed?” It’s a common question among people with chronic illnesses. I’ve heard it asked of my diabetic partner, and I’ve been asked myself. But when you’ve been diagnosed with spondylitis, or any disease that’s difficult to diagnose, the answer doesn’t tell the whole story. I was diagnosed? I was never formally given a diagnosis. Doctors threw around “arthritis” a lot, but that’s not a specific disease. I was never sat down and told, “You have spondylitis,” so it wasn’t the big “Ah-ha!” moment, for good or bad, that some people have. My partner remembers when he was diagnosed with diabetes. My friend knows exactly when she was…
Alfred the Great was disabled
Too often, it’s assumed that disability has no place in the lives of heroes and pioneers. At times, it’s even been actively removed from their stories. Alfred the Great had a chronic illness for much of his life, and by any modern standard, he was disabled. “Great” and “disabled” aren’t antithetical, and “weak” and “disabled” aren’t synonyms. But for many years and to many people that was believed to be the case, and disability has been erased from some versions of Alfred’s story. Alfred the Great was king of Wessex, in England, in the late 9th century. He is credited with the creation of modern England. He unified the English…
Is chest binding possible with arthritis?
Costochondritis, a condition where the cartilage of the rib cage gets inflamed, is already discussed as a side effect of wearing a chest binder. But what about when you have pre-existing costochondritis and want to chest bind? I’ve tried and failed to find advice for, or even a single mention of, people with arthritis or other chronic illnesses who want to bind their chests. Maybe I just haven’t found the right Reddit post. I haven’t really found a good solution for myself so far, but I can share the frustrations I’ve been through. Chest binding: A brief introduction Chest binding is the practice of someone making their chest appear flatter.…
My first ACR Annual Meeting! (ACR18)
I went to the American College of Rheumatology Annual Meeting this past weekend! It was a bit of a rush to get there. I only found out that it was happening on Friday, and when I learned it was in Chicago, I knew I couldn’t waste the opportunity to go. It was awesome to get to see the most cutting edge research in rheumatology right now and be able to hear it directly from the researchers. I also made some really cool connections with the Arthritis Foundation. Here’s some of the coolest stuff I learned at the conference. Research A quick look at some conclusions I found cool from the…
“Disabled” doesn’t mean “unable”
I’ve been through “disability education” a few times now as part of employment. The most recent time was for my job working at the tutoring center of my university. Someone from The Center for Disability resources came to talk to us about how to work with people with disabilities: what to expect, how to adapt, what not to do. It was very short, so it couldn’t avoid being lacking. Surprisingly, it covered both visible and invisible disabilities, although not many of them. Those kinds of limitations aside, there was one main problem with the training: The entire time, the presenter talked as though people with disabilities were an alien species…
STEM burnout: A student’s perspective
It’s been difficult for me to keep up with making content lately because senior year of college is absolutely crushing me. It’s gotten to the point that I’ve actually looked into switching programs, switching schools, taking time off, dropping classes. I’ve considered dropping out senior year, when I only have 14 credits and 2 semesters left before I can graduate. Worse, it’s only 4 weeks into the semester and I’ve already considered it. What’s terrifying and sad is that I’m not the only one. I had a breakdown last night, was sure I couldn’t continue with the semester, but I did. I made it to class today and met with the…
My unnerving steroid injection experiences
Because of my problems with my shoulder, I’ve had corticosteroid injections (also called cortisone injections or steroid injections) more than once. Doctors (at least the ones I’ve had) don’t counsel you on anything to watch out for, they just give you the shot and send you on your way. Which is why, when I started having side effects, at first I thought there was something wrong with me. Harmless beginnings Corticosteroid injections are often given to alleviate pain in a specific joint or location, often due to arthritis, bursitis, tendonitis, or some other condition that is causing inflammation there. The first time I had a corticosteroid injection was from a crazy…
What spondylitis is like
Spondylitis refers to arthritis of the spine. Instead of being caused by wear and tear on joints, this kind of arthritis is caused by the immune system attacking joints. This is my honest experience with spondylitis. It’s just the facts, not meant to be pessimistic. From the beginning My first symptoms started when I was in middle school: tendonitis in my ankles and then hip, knee, and back pain. In high school my shoulder became a problem, and eventually, smaller joints like my wrists and fingers. After many years, I finally found a doctor who would treat me while figuring out what was wrong. I had figured it out years…
My journey with spondylitis
This is the long version of what I’ve gone through with spondylitis, for anybody curious about what kinds of symptoms I’ve had. Maybe you’ll find something to identify with, or maybe you’ll get a better understanding of spondylitis. Or, maybe you’re looking for a shorter description over here. (If any of the medical terms get too confusing, check out the quick guide to medical terms.) A slow realization The first thing I had a problem with were my Achilles tendons. At the time, and even years later, I didn’t realize that it was connected to my later symptoms, but it’s actually not uncommon for tendonitis to be the first sign…
