Hey #ChronicLife FriendsBy now many of you have already read my Top 10 #ChronicLife Relationship Tips, so it’s time for an introduction.
I’m Anna Legassie your newest Rheumatoid Arthritis patient expert. I was diagnosed with Systemic Juvenile Rheumatoid Arthritis twenty-one years ago at age eleven. It took three years of symptoms, dozens of doctors’ visits and several ER trips before receiving my diagnosis, and another several years of figuring out a treatment plan before my arthritis was under control. By the time I graduated high school, I’d had bilateral total hip replacements and a handful of knee surgeries.
Since then, I’ve had another three hip replacements, but one of my biggest struggles has been figuring out how to define my identity with RA. For a long time I tried keeping the two separate: I’m Anna, first and foremost, and my RA was something I barely acknowledged as part of me. For most of my college years I hid it from friends and boyfriends, going as far as taking medications in the bathroom while out to eat with friends. There was nothing I wouldn’t do to try to keep my RA separate from the rest of my life.
A few years later with my RA flaring wildly, I decided to take charge of my health again. At my first appointment with my new orthopedic surgeon he told me I’d suffered a “catastrophic failure of my hip replacements” and that I needed to be scheduled for surgery immediately. I was still taking classes and told him I’d need until the end of the semester before I could move forward with surgery. We scheduled a bilateral revision of my hip replacements for that July.
A few weeks later a flare of my Pericarditis landed me in the ER. I was severely dehydrated and the paramedic student they’d sent in to place an IV blew vein after vein. My boyfriend at the time stood huddled in the corner squirming because he didn’t like needles. As my little sister held my hand I realized that this fracture between me and my RA meant that my boyfriend wasn’t prepared for moments like this, nor was he prepared to handle my upcoming surgery. We broke up shortly after.
Since that day I’ve worked to marry the two parts of myself: Anna and RA. Today I’ve found ways to weave RA into the narrative of my life in a way that not only am I comfortable with, but I’m proud of.
Last March I was given a travel award by the Arthritis Foundation to attend their annual Advocacy Summit in DC where I spent two days telling my story to my elected officials in an effort to secure research dollars and increased access to care for patients. Less than a year later I was appointed as the Leadership Board Advocacy Chair for the Foundation’s New England region and I now serve on my hospital’s Patient and Family Advisory Council. The trick, it turns out, to marrying these two parts of myself was giving my RA a voice to do something positive for myself and other patients.
Perhaps the most surprising part of finding my voice as an advocate, was how it led me to reclaim my identity of as an athlete too. Like most patient advocates, I rely largely on social media to raise awareness. Doing so connected me with other advocates the world over which is how I came to be friends with a triathlete and marathoner – both of whom have RA. Watching the ways they challenged their diagnosis led me to do the same. In May of last year I wrote a blog about how much I hated not running. By December I’d run six races with the support of my new found #RheumAthlete friends.
Despite finding myself through advocacy and racing, it’s not always an easy union between me and RA. These past few weeks have been especially tough as my body is no longer able to tolerate the side effects of one of my medications. Starting on Monday I’ll take a decreased dose, and, if things don’t improve in the next month, I’ll stop this medication entirely. On the surface it’s a win as I hate this particular drug, but in the balancing act of managing my RA I’m terrified of the potential health fallout.
But while I wait for the verdict on this one, I’m so lucky to have some pretty awesome things to distract me: I’m going back to DC again for this year’s Summit and I’m training for several upcoming races. Not to mention I’m so excited about joining the HealthCentral family and sharing my RA experience with you!