I, The Villain  

A rare autoimmune disease known as Granulomatosis with polyangiitis (GPA); formerly known as Wegener Anca Vasculitis (WAV); and commonly described as vasculitis; however you elect to label it, this is what I am. I am The Villain, with evil force, malicious intent, devoted to wickedness as I inflict harm.  

I am her Villain; this is her fourth relapse. A round of applause please. I am the breed of Villain that slinks up slowly and deliberately, for months she doesn’t know I am conjuring my alchemy. I, The Villain, have power and I employ it to control and disrupt her life: hide her from the world as I inflame her blood vessels. The inflammation I create, primarily affects small to medium-sized blood vessels, substantially in the upper and lower respiratory tracts and kidneys but can dominate any organ of her body if I so determine. She naively describes it as an annoying cough and hearing crickets chirping in her ears. I am much more potent than she can imagine, except in those darkest of moments when vulnerability and fear overwhelm her, then she knows I am a legitimate Villain. 

She, because of me, is blocked from satisfying the accomplishments she cherishes socialising with friends, unique moments with family, sweating it out at the gym, interacting with the places she craves to inhabit, and let us not forget engaging with her most esteemed writing group – A Community of Writers. I, The Villain, keep her hidden from all of this with constant and unrelenting fatigue. I will not afford her the energy to connect with others as she craves, nurture her curiosity, gather the capacity to build physical strength, and any other whim she may determine as her overactive mind transports from one notion to another. Her mind is rarely fatigued, never demanding rest. 

And I, The Villain, for most of the time, am unequipped to make it cease, although I can confuse and create doubt. Oh yes, I, The Villain, listen with glee to her tentative words, ‘My antibody level should be around eight.’ A pause. ‘It was 13 in November last year.’ A slightly longer pause. ‘21 in March this year. Or was it twenty-three.’ A pause, a frown, her smile vanished. ‘And 118 at the beginning of August,’ she concludes. I, The Villain, am delighted, oh yes, exhilarated in fact. Typically, she employs data to inspire, challenge, engage, always with confidence; except when I dominate. 

Not only do I have the pleasure of grasping her from the world, I, The Villain, apprehend her from herself. This woman who listens to her body, has a confidence that can delight or annoy is lost to herself as her antibody numbers increase and my strength as The Villain grows. Her self-assuredness is weakened to the point of constant anguish, fear, vulnerability, underpinned by fatigue, always fatigue. The distress, I further invoke hides her from herself. As she appears in one of the mirrors in her home, she cannot clearly see herself. I, The Villain, have hidden her from herself. I am delighted. 

Her strength and anxiety catalyse a fight response: a visit to the GP with blood tests for all conceivable ailments. The technician ticks all boxes except one that most concerns her: the antibody count. She does not comprehend I, The Villain, have thwarted her plans. She persists with an additional blood test anticipating results, yet again, for an additional two weeks. 

Further persistence and endurance, when will she stop. She, yet again, involves her GP and that irksome specialist phones her. He has established all details for the infusion, to eradicate me, her Villain. OMG, this woman will not cease. Another GP visit where he indicates she should attend a hospital, and of course she complies, consequently she has her first infusion. And while she does I, The Villain, do my utmost to halt it. Over the loudspeaker, ‘MET, level four, room nine, bed one.’ A medical emergency team arrive, nevertheless, I, The Villain, cannot stop the infusion for more than an hour and a half. 

Her hospital specialist and specialised nursing staff undertake to inform her she only needs one infusion. It is my constant chatter in their ears that confounds them. Her stubbornness with resultant phone calls to that irksome specialist signifies that the second infusion will transpire. I, The Villain, continue to be gratified by the fatigue she endures before, during and after each infusion, as she is hidden from the world and hidden from herself. 

At 9.42pm on August 29 she turns to her husband and smiles, ‘The haze has lifted. I have hope.’  She ponders, for only a moment, will this endure. August 30, she writes this discourse for her esteemed writing group and edits it on August 31 and September 1 and reads it today on September 2. She is no longer hidden. But relax not dear friend, I, The Villain, am designing relapse number five. Once more you will be hidden from the world and yourself, and this time, I will be wiser and stronger as I comprehend your tactics more deeply, and display greater influence on those medical experts that surround you. Our battle has not yet concluded. 

Copyright Cathy Beesey, September 2025. All rights reserved; this intellectual property belongs solely to Cathy Beesey.

A message from Cathy

This, I had to write. Thank you to authors Holly Ringland and Elizabeth Gilbert for their writings on creativity. It freed me to write without purpose or care, giving space to my creativity. I chose to write in the third person (I. am she and her) to distance myself from the fear and despair I have experienced with this my fourth relapse. But as I wrote it seemed it was me writing this story, with words I commonly use – I thought (not knowing where this thought came from) to use an online thesaruas. I enjoyed it so much, discovering words I rarely if ever use that I ventured to the thesaurus at least fifty times. On the final read I found my purpose – to share with those I love what this is like for me. Oh and I felt very grown up with such interesting vocabulary.

Finally and most importantly thank you my esteemed writing group for your response to this very personal story and the deep discussion. I learn so much from you and am filled with joy each and every time we are together.