Shedding Light on Invisible Pain During Facial Pain Awareness Month

October is recognized as Facial Pain Awareness Month, a time dedicated to raising awareness about conditions that often remain hidden from view. Among these is Trigeminal Neuralgia, a debilitating disorder characterized by severe facial pain. Those who suffer from it often endure an invisible battle that can significantly impact their daily lives.

Understanding Trigeminal Neuralgia

Often referred to as “the suicide disease” due to the excruciating pain it inflicts, Trigeminal Neuralgia affects an estimated 4 to 29 individuals per 100,000 worldwide. The condition is notorious for its unpredictable nature, with episodes of pain described as electric shocks or lightning bolts. For many, including Michele Roys, who resides in Limerick, living with this condition means facing challenges that are invisible to those around them.

Roys, a busy mother of two, recalls her journey to diagnosis, which began with a severe flare-up that sent her to the hospital. Despite undergoing numerous scans that returned normal results, she was left in doubt for over four years. It was only after an MRI revealed an artery pressing against her trigeminal nerve that she received confirmation of her condition. This diagnosis brought both relief and heartbreak, as it validated her pain but also highlighted the years of uncertainty she had endured.

Living with Invisible Pain

Roys emphasizes the emotional toll of living with an invisible illness. She notes that comments like “You look great, so you must be feeling better” can be disheartening, as they fail to acknowledge the daily struggles faced by those with chronic pain. The condition does not manifest outwardly; therefore, many individuals learn to mask their suffering, often leading to feelings of isolation.

“When your illness is invisible, you become an expert at hiding,” said Roys. “You learn to measure smiles so they don’t trigger spasms.”

Her experience inspired her to write a memoir titled But You Look Just Fine, which was launched earlier this year. The book is not a medical account but rather a personal narrative detailing her journey toward rediscovering joy and self-worth amidst her ongoing struggles with pain. Roys aims to illuminate the importance of understanding and empathy towards those living with invisible conditions.

How to Foster Understanding and Support

Roys advocates for a compassionate approach to supporting individuals with invisible pain. She suggests a few practical strategies for friends, family, and employers to foster a more understanding environment:

• Believe them the first time: Empathy should not require proof. Validating their experience can alleviate feelings of isolation.
• Be flexible: Chronic pain does not adhere to a schedule. Understanding when plans change can reduce guilt and support mental well-being.
• Stay connected: Simple gestures like a text message, a home-cooked meal, or a quiet visit can make a significant difference in someone’s life.

In the workplace, introducing flexible working options and checking in on employees can help them manage their pain while maintaining their sense of dignity and purpose.

Roys reflects on her evolving perspective, stating, “I thought joy was something I’d find after the pain — but I’ve learned it’s what carries us through it.” As she navigates life in Limerick, she now views those around her through a lens of compassion, recognizing that many individuals may be silently enduring their own battles.

As we observe Facial Pain Awareness Month, Roys’ message is clear: invisible does not mean imaginary. Understanding Trigeminal Neuralgia and its impact is crucial. It could affect your neighbour, your co-worker, or someone you encounter daily without any visible signs. By encouraging open conversations about these conditions, we can foster a more empathetic society.

For those who know someone grappling with unseen pain, Roys encourages reaching out. “Check in, listen, and share this story,” she advises. “The strongest people you’ll meet are often those fighting battles that remain hidden.”

With her memoir and advocacy, Michele Roys seeks to create a more informed and compassionate world for individuals dealing with invisible illnesses. Her story serves as a reminder that, while the pain may be unseen, the impact is very real.