The author’s son’s favorite song, “Vampire” by Olivia Rodrigo, has led him to embrace the vampire lore, as he dressed up as one for Halloween. The author herself has developed a different view of vampires due to her lupus, which causes painful rashes and sensitivity to sunlight, leading her to liken herself to a vampire. Various symptoms, from pain to cognitive fog, have left her feeling betrayed by her own body. She describes autoimmune diseases as a kind of bodily betrayal, with the immune system attacking healthy tissues.
Over time, the author felt more and more like a vampire, avoiding sunlight and feeling paler and anemic. The association between vampires and diseases intensified by sun exposure and garlic has a long history. The author’s struggles with her appearance led her to remove mirrors from her house, repelled by her own reflection. When she was diagnosed with lupus, she felt relieved to have a name for her condition but devastated by its unpredictable and incurable nature. Lupus is described as a shadowy illness that can affect various bodily systems and organs, hitting predominantly women, especially those of color.
The author’s journey to a lupus diagnosis involves self-advocacy and navigating the complexities of the U.S. healthcare system, leading to weekly appointments with various specialists. Lupus is highlighted as a disease that is difficult to diagnose and treat, with a lack of research due to its prevalence in women. Joining an online support group, the author found solidarity among others with lupus who also feel ‘vampire-like’ in their struggles with sun sensitivity. She likens her experience to a butterfly going through a transformation, grappling with the uncertainties of her illness.
Living with lupus involves accepting the unknowns, appreciating good days, and mourning the loss of her previous self. The author’s son sees them both as vampires hiding from the sun, emphasizing their shared experience. Despite the nonlinear nature of lupus and the lack of a cure, the author finds hope in her progress since beginning medication. She reflects on the challenges and triumphs of living with lupus, acknowledging the need to pace herself on difficult days. Ultimately, she learns to navigate life as a ‘lupie,’ finding resilience in the face of her illness.
