In Praise of Shewolves: How Embracing My Inner Werewolf Helped Me To Cope With My Chronic Illness.

Zuleika Lebow.

Zuleika Lebow is an artist and community builder born and raised in London. Her work is centred around themes of identity, race, the sick body and lexicon via sculpture, photography and writing. Lebow interrogates the politics of representation and marginalisation inaccessible, playful and convivial ways that generate alliances; recognising knowledge and culture as an inherently diverse, shared resource. Utilising philosophical texts, popular culture, sci-fi and esoterica as starting points, she creates spaces, events and artworks which facilitate a different approach to discussions of class, race, gender and language.

Congratulations, it’s a Werewolf!

The Shewolf in me was born in August 2012. I had already been diagnosed earlier that same year with an underactive thyroid (Hypothyroidism) and perpetual anaemia due to sickle cell trait. Much later I was told that it was common for autoimmune diseases to ‘travel in packs’, no one knows why yet. Solidarity, I guess? Hard to be a disease wreaking havoc on a body all by yourself (even apocalyptic horsemen have friends). I had just turned 22, finishing my first year studying Fine Art at Middlesex University in a haze of pain and trips to A&E. I remember receiving my Lupus diagnosis, collapsed in a chair, shivering with a fever, my hands and feet so swollen they looked like claws and saying “So….I’m a werewolf then?!”

Systemic Lupus Erythematosus (SLE) or Lupus, is an autoimmune disease where the immune system mistakenly attacks healthy tissues of the body. It is more common in women, particularly those of African, Caribbean, Chinese or Polynesian descent. Bad news for me as a mixed-race woman of European Jewish and Jamaican descent. It can affect everything, causing fatigue, painful rashes, hair loss, photosensitivity, sun allergy, kidney and liver failure, nerve damage, aphasia, anxiety, depression and joint swelling. Adding insult to injury, it takes on average 6.5 years for people with Lupus to receive a diagnosis. This is partially due to Lupus masquerading as other diseases, but medicalised racism and ideas about “hysterical” women play a huge part in the battle for proper diagnosis and testing. It took me around nine months, and that was long enough. Add to all this the side effects of cocktails of immunosuppressive drugs, many of them based on cancer treatments, and you have a recipe for a human who is often bone achingly tired.*

Nobody knows why Lupus, meaning “wolf” in Latin, is called Lupus. Theories abound, the prevailing one being that the lupus vulgaris or “butterfly” rash some patients get across the nose and cheeks was thought to resemble a wolf’s bite. This feeds into my own idea: SLE is an illness which primarily affects women and a link between oestrogen and the disease is well known (Khan and Ahmed, 2016). It is likely that women kept track of their menstrual cycle using the moon, and may have even noted an exacerbation of Lupus symptoms around this time.

Given that wolves and the lunar cycle are already intertwined in the mythological collective consciousness of the West, I can see how early doctors connected the dots.

So, this horror fan decided to turn the name on its head. A strong believer using humour to alchemize pain, I began making werewolf jokes. My clawed hands and feet became my paws, my air falling out was me moulting, preparing to shapeshift. I found that it was easier for me to contextualise my experience for friends and family by sending them clips from lycanthrope horror flicks, the one from An American Werewolf in London (Landis 1981) being a particular favourite, rather than explaining it over and over.

I now knew what it was like to live with a volatile creature beneath my skin which I could neither control nor predict. I too was in skin-splitting agony both mentally and physically, attempting to come to terms with the temperamental nature of the disease I would now live with for the rest of my life. The wolf in my veins was ready to strike at any moment, always watchful, always there. There is no cure for Lupus.

The symbol for many Lupus charities is a purple butterfly – is anything I have described compatible with that innocuous image? Symbolising visceral, scary illnesses which affect women with benign defenceless creatures or ribbons in pretty colours contributes directly to the sanitization and erasure that regularly takes place when disability or illness are discussed. Making illness more palatable for non-disabled people. But what about the direct-lived experiences of sick people? We deserve to be seen and have our pain acknowledged in the emblems chosen to represent us.

The Shewolf Diaries

It took me a long time to speak out about my journey with Lupus. My desire to share my story was hampered by the thought that I may be considered “an attention seeker” for talking about it. Who wants to hear about the pain and struggle all the time? After joining Instagram as @shewolfdiaries and seeing the amazing community of sick folks on the platform, I came to the conclusion that unpacking all the internalized patriarchal, racist, ableist nonsense is part of the process. We expect a lot from people with marginalised identities, particularly on social media. We are expected to be the poster children for our communities, to be “woke” activists, to be patient with those who are willfully ignorant or actively harm us and to produce profundity with every post we make. Who has the energy for that?

After each transformation, the werewolf does whatever she wants. Usually that involves being majorly disruptive and then going home for some food and a long nap. Whenever my paws hurt or my teeth ache, I will rest and then I will rest some more. I will guard my self-care and luxuriate in the abject process of existence. It’s no pretty, sanitized, palatable purple butterfly, but I can think of worse ways to live.