“I write to discover what I know.”
— Flannery O’Connor
Hi, I’m Megan. I’m a writer, a researcher, a teacher, and an academic administrator. On good days I take photographs, sing, dance, practice yoga, and run (though not usually all at once). Sometimes I say things on Twitter. I do all this while managing lupus and rheumatoid arthritis. In the months immediately following my diagnoses, I frequently wished there were more resources for young people struggling to balance work, life, and chronic illness, so this blog is my contribution to that particular genre. You’ll also find entries about narrative, self-identity, and disability (my academic research) mixed in alongside health information, patient advocacy, and more personal writing.
I’ve had some form of inflammatory arthritis since I was a child, but it was relatively mild. I became increasingly sick during graduate school, and shortly after I completed my comprehensive exams in early 2011, I had a major flare that led to my lupus diagnosis. I responded moderately well to conservative treatment, but I continued to experience unrelenting joint pain and swelling, which led to a diagnosis of overlapping RA (aka “rhupus”) about six months later. Because of the annual pharmacy benefit limit and step therapy (or “fail-first”) policy of my insurance company, I spent two years trying (and failing) low-cost treatments for lupus and RA while I effectively put my graduate career on hold and watched my body deteriorate, almost beyond recognition. Finally, in June of 2013, thanks in part to the provisions of the Affordable Care Act, I received authorization to begin the biologic drug Kineret (anakinra). I’m not being hyperbolic when I say that Kineret has given me my life back. I was then able to complete my doctoral dissertation, receive my PhD in American Studies, and return to full time work in academic administration.
Because of the extra-articular manifestations of my disease(s), my history of inflammatory arthritis, and the rapid improvement I showed with Kineret, my rheumatologist has begun to suspect that I have something closer to Still’s disease or TRAPS. At this point these conditions are difficult to confirm through blood tests, but I’m thrilled to have finally found a treatment that works. There have been great strides in the science of autoimmune and autoinflammatory conditions in the past few years, as well as the development of a large number of new and highly effective biologic treatments. I am hopeful that during my lifetime we will see new approaches to identifying and treating RA, lupus, and other autoimmune and autoinflammatory conditions based on genetic markers and other characteristics, rather than the traditional method that uses an inventory of symptoms, imprecise blood markers, and swollen joint counts.
In the meantime, I’m an active supporter of patient-centered research, serving as a patient representative on a standing review panel for PCORI. As a result of my personal experience of the many barriers to healthcare, I am also a committed advocate for access to medical care and appropriate treatment, and continued funding for research. My commitment extends to all chronic illnesses, but I am particularly concerned about rare diseases and autoimmune and autoinflammatory conditions. I have worked with the American College of Rheumatology through their Advocates for Arthritis Program. I also participate in advocacy and patient support activities with the Lupus Foundation of American, the Arthritis Foundation, and Seth’s 50 State Network (part of the the Global Healthy Living Foundation).
There are many preconceived attitudes and negative stereotypes out there about who suffers from chronic illnesses and why. I hope that by narrating my own experience–on this blog; in conversations with friends, family, and fellow patients; and in meetings with my elected officials–I can change the way Americans approach illness, disability, and the fight to ensure access for those who lack resources: of health, of money, and of representation. Are you interested in these things too? I’d love to hear from you. ♥