I follow an artist called Hallie Bateman on Instagram. Apart from being an incredible illustrator and writer, she’s also an avid supporter of social justice issues and an advocate for people who have the impulse control disorder trichotillomania. Last week, I came across one of her Instagram stories updating her followers on how she’s doing with the management of her hair-pulling condition. She mentioned speaking with a friend about how much more positive and confident she felt, which started open discussions about trichotillomania on social media. Her friend’s response resonated deeply with me, stating that in speaking out and raising awareness, we “make it real” — not only for the rest of the world but for ourselves as well.
Awareness is not a given; it’s a choice, and an incredibly personal one at that. Only a month after my lupus diagnosis, I made a choice that can’t ever be taken back, not even if I wanted it to be. Having been encouraged to keep a journal by my counselor, one night I sat down at my laptop and decided to take it one step further by writing the very first piece about my new chronic illness, before clicking “Publish” and “Share on Facebook.”
At the time, there was no way of knowing how monumental that moment would be for me. The only thing on my mind was that my life was changing rapidly and I needed to talk about it. In retrospect, that moment would be critical to both my acceptance and the healing process, because what I did was to take something that was invisible, intangible, and unimaginable for nearly everyone around me and make it real.
Living with any kind of condition, you start to feel a kind of undeserved shame, because now you’re weird, you’re not like everybody else anymore. All you want to do is hide that awful part of yourself as far deep down as possible, trying to make believe that the more you hide it from the world and keep up the appearance of being “normal,” the better you’ll be. But it won’t ever fix you. Until you can accept yourself for who you are — flaws and all — it’ll only result in more hurt and more internal struggle.
I had the choice to keep it all inside of me. I had the choice to keep my invisible illness invisible for the rest of my life. But I didn’t. In the most difficult part of my life, I needed to speak openly; I needed lupus to be as visible to everyone around me as it is to me.
Awareness is not about attention. Awareness is about validation, empathy, understanding, and community. When I talk about my life with lupus on social media, I’m validating that the struggle I face with my autoimmune condition is real, even though no one else will ever truly see it. Writing this weekly column, I endeavor to give people outside of the lupus community an understanding of what it means to be chronically ill without a cure. Though they may just be words to some people, these articles are incredibly personal to me. I pour my heart onto the page in the hope that my emotions might resonate and help someone else to feel that their struggle is both valid and real, that I understand, and that they’re not alone in this.
Society can accept the struggle of a temporarily broken limb or the common cold because everyone has experienced them. But it can’t seem to accept what it can’t directly empathize with or see. Anxiety is real. Depression is real. Lupus is real. The lack of visibility doesn’t make the long list of symptoms any less harrowing or mean that treatment takes any less of a toll.
I talk openly about lupus because not only is it real, it’s my reality.
Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to lupus.