Why Autoimmune Disease Awareness is so Important
Written by: Valerie G
March was Autoimmune Awareness month and in true “spoonie” fashion I’m writing about it several months late, mid-flare, and having been bed-bound for much of that time. Well, trust me—I’m aware! All jokes aside, an important aspect of Autoimmune Awareness month is increasing attention to and broadening understanding about autoimmune diseases. Although March has long been over, awareness does not need to be restricted to a designated time. Just as those with autoimmunity live with it year-round, advocacy should be continuous, too. Our aim, as advocates and allies, is to create more opportunities to advance research, reconfigure a world that is centered around the non-disabled, and bring hope to those living with autoimmune conditions.
Although symptoms may vary, at its core autoimmune diseases are “[conditions] in which the immune system mistakenly attacks and damages healthy body tissue and cells, rather than protecting the body as it was designed to do.” There are over 100 known autoimmune diseases; some affect specific body parts, while others can involve multiple organs at a time. The autoimmune conditions that I have (rheumatoid arthritis, Sjögren’s syndrome, and undifferentiated connective tissue disease) are systemic, meaning they fall into the latter categorization. Receiving a diagnosis is a long, grueling process that takes an average of 4.5 years and four physicians. Many times there isn’t a straight-forward test to determine if a patient has an autoimmune disease, or which one they have. I was extremely fortunate to have been diagnosed quickly despite being seronegative—meaning the usual markers that indicate a rheumatic condition aren’t found in my bloodwork. Even though I experienced symptoms prior to seeking help, I attributed it to everyday issues. My hands were abnormally achy? It’s because I was making DIY Harry Potter wands for my job! I was having trouble on my daily run? Obviously I didn’t stretch properly! I was feeling more tired than usual? I love naps, that’s all it is! My journey into the chronic illness world began with a lot of justification until I couldn’t ignore the symptoms anymore. Within a short amount of time I went from playing kickball with the kids at work, to needing mobility aids to get around. The swiftness of my diagnosis was due, in part, to a doctor that sent me to a rheumatologist even though my tests “came back normal” (cue the collective eye roll from the entirety of the chronic illness community!) From there I was whisked into a whirlwind of tests, treatments, and doctors appointments.
As someone who wasn’t very familiar with autoimmune diseases before my own diagnosis, there were A LOT of things that surprised me. Some symptoms like joint pain and stiffness were understandable. But I was NOT prepared for the brain fog (I liken the difficulty with memory, concentration, and confusion to Winnie the Pooh and his “think, think, think” situations) or different ways to experience and describe pain (is it burning and localized? Sudden and sharp? Throbbing and constant? And forget about trying to use the typical 1-10 pain scale!) Pre-diagnosis Valerie had been blissfully unaware that the side effects from medications can be just as unexpected as the conditions themselves. I’ve always enjoyed drastically changing hairstyles, but the medicine-induced hair loss took time to accept. This change wasn’t my choice and served as yet another reminder of being sick. Autoimmunity taught me how to read lab work (to a certain extent) and become fluent (also to a certain extent) in medical jargon. It introduced me to terms that I had no idea about, like dynamic disability. My previously non-disabled self thought that disabilities are constant, consistent, and visible. You can imagine the confusion I had when my own disabilities fluctuated from day to day (sometimes even within the same day) and required different mobility aids (or none at all) depending on how I felt. But that’s the nature of a dynamic disability: being unpredictable and often misunderstood.
Although I’m not proud of my past naïveté, it’s important to talk about because it’s a big part of why I’m so passionate about advocacy now. I’ve found that much of society’s lack of involvement with the chronic illness community is similar to this part of my story. More often than not, being uninformed (as opposed to uncaring) is at fault for this disengagement. Frankly, unless you or someone you care about lives with autoimmune conditions, you’re not likely to know much about them. You may hear about lupus or Crohn’s disease in passing (perhaps in a nonsensical commercial with smiling people gallivanting through a meadow) but they aren’t as common knowledge as other chronic illnesses may be. Raising awareness throughout society, as a whole, helps in many ways. Having more people cognizant of autoimmunity increases the chances of securing much needed funding for research. Furthering research means having a better understanding of its causes and, in turn, more effective treatments. On a bureaucratic level, widespread recognition strengthens our ability to create systemic change. Today’s society has been built with healthy, non-disabled people in mind. It doesn’t provide the accommodations necessary for the chronically ill and disabled communities to truly thrive. Little things like additional sick days and having elevators in buildings could be the difference in making the world more accessible. They’re also things that get overlooked all too often. Lastly, making the public more aware of autoimmune and chronic conditions would establish an attitude of empathy and community across the board. Similarly to those within various marginalized communities, many of us feel othered, ostracized, and alone. These experiences, compounded with the mental and physical aspects of our diseases, widen the gap between the disabled and non-disabled. Instead of a singular sense of humanity we’re divided into groups based on something out of our control. Raising awareness creates an interconnectedness that offers the support we seek.
The chronic illness community has shown me deep compassion and unconditional acceptance that I’ve been hard-pressed to find elsewhere. Through advocacy, I hope to return the favor. I encourage anyone living with autoimmune conditions (or any other chronic illness) to advocate for themselves and raise awareness in whatever way they’re able. And I challenge others to become true allies to our community.