I have lupus, but I refuse to wear a scarlet letter ‘L’ on my chest

Hester Prynne is being condemned for a private act that became a public sin.

After being freed from jail, she’s led to stand on a scaffold before a crowd of villagers. She’s holding her 3-month-old baby and wearing an embroidered letter “A” on her cloak, both attesting to what she did.

Prynne is the main character in “The Scarlet Letter,” written by Nathaniel Hawthorne and published in 1850. She is a young English woman sent to Puritan Massachusetts to wait for her husband’s arrival. Because of a shipwreck and imprisonment, her husband is delayed. During this time, Prynne, believing her husband to be dead, has an affair with Puritan minister Arthur Dimmesdale. As a result, she conceives and gives birth to a daughter named Pearl.

Prynne chooses to keep Dimmesdale’s identity private and is forced to wear the scarlet letter on her chest at all times as a relentless reminder of her adultery.

To be forced to bear a symbol of wrongdoing on your chest, moral or not, provokes utter shame.

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My own scarlet letter

Ashamed. Disgraced. Convicted. Isolated.

These four emotions surfaced for me while I faced a series of autoimmune disease diagnoses, such as Sjögren’s syndrome, systemic lupus erythematosus, Hashimoto’s disease, and psoriatic arthritis.

Maneuvering through debilitating lupus flares and hospitalizations felt like years of being disgraced. My chronic, unpredictable diseases imposed limitations that isolated me from my familiar world of multitasking, high productivity, and writing campaigns and books with pain-free people. To a degree (especially on the worst days and at the worst times), this isolation made me ashamed and an outlier.

My invisible relationship with the “great imitator,” as lupus is sometimes called, became a public shame each time I acknowledged to others that lupus had prevented me from committing to a job or participating in an event. It surfaced when certain professional outfits irritated my skin, or full-body swelling made wearing those outfits unbearable. So I dressed and moved throughout the day, shamefully accommodating lupus and arthritis.

It became harder to mask rashes and sores, hair loss, hearing loss, loss of appetite, and loss of balance as I cycled in and out of lupus flares. The debilitating pain battered and convicted me for having an immune system fragile enough to host conditions that attack and try to kill me.

It all was akin to wearing a purple cloak embroidered with a golden “L” on my chest.

But I haven’t donned the cloak. I refuse to wear the “L.” It’s a choice I’ve made to hinder the judgment and labels that come with being ill. Refusing it allows me to do amazing things, even while captive to pain or immobility, without waving a lupus flag — either as a badge for attention or one showing regret.

Instead, I wear symbols like a wolf pendant and Prince’s love symbol, which are personal reminders of my resilience, ambition, and survival — not of shame, disgrace, or isolation.

I see my symbols daily, instead of a scarlet letter, and find more reasons to show up in the world to create and celebrate unashamed.

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, and are intended to spark discussion about issues pertaining to lupus.