Learning to live well with Fibromyalgia – Sharon’s Story

A Diagnosis Without a Roadmap

When I was diagnosed with fibromyalgia in 2019, I was given little more than a name for my pain. There was no clear plan, just a vague shrug and passive suggestion to “learn to live with it.” Most healthcare professionals I encountered responded with doubt or impatience. I didn’t want to simply exist with fibromyalgia; I wanted to learn to live with it.

Stigma and Loneliness

My condition followed a period of intense stress and workplace bullying, which took a real toll on my health. At the time, my family and some medical professionals even questioned my experience. That stigma made things even harder, it wasn’t just the pain I had to manage but the loneliness of not being believed.

“Skills Not Pills”

I tried various medications, none of which sat well with me, leading to various side effects with little relief. This led me to investigate and explore more holistic routes. Through the Living Well with Chronic Pain course, I learned to focus on “Skills not Pills”, practical tools, pacing strategies and mindset shifts that gave me a sense of agency again. I’m not against medication, I believe it has its place, but I feel it should be part of a wider toolkit, not just the whole answer.

Finding Chronic Pain Ireland was a turning point. They provided me with a welcoming yet knowing smile and a Sunflower Lanyard. Their webinars, newsletters, and coffee Zooms were a lifeline. I began to feel less alone and more informed. I’ve taken part in various Public and Patient Involvement (PPI) activities through Chronic Pain Ireland, which helped me to learn a lot more and become heavily involved in how my experience can help shape others’ understanding.

“Wellness is a skill. And like any skill—practice makes progress.”

Turning lived Experience into Advocacy

Chronic Pain Ireland is all about empowering people and one of the many opportunities they gave me and other members was to get involved in their partnered research project “Against Stigma Self Care Programme (ASpida)” with researchers from the University of Cork.  A group of Chronic Pain Ireland members was at the centre of this research project and we helped develop and co-create an against-stigma self-care programme, and the aim of this is for Chronic Pain Ireland facilitators and people with lived experience to deliver it to local communities.

The programme is aimed at shifting our personal perception and supporting patients in understanding the deeper layers of chronic  conditions—beyond just symptoms.

Though I can’t work right now, I stay active.  I volunteer with Aware, supporting others navigating mental health challenges. I help facilitate the LEAP (Lifestyle Education Awareness Programme) course, which focuses on making small changes and doing them consistently to better your health and subsequently your pain. I volunteer with the local Tidy Towns and do a lot of gardening, which constantly tests my pacing skills and keeps me grounded. Along with these volunteer roles, I’m dedicated to learning all I can.

I’m currently enrolled in an IPPOSI Patient Education Programme which is a training program designed to empower patients and patient advocates to engage effectively with health research and technology. I also watch and join every and any webinar I can get a link to.

In 2023 and 2024 I was honoured to be a Pain Ambassador during Pain Awareness Month, representing CPI in their “Waking up to Pain” and “From Pain to Power” campaigns. It gave me a platform to raise awareness and advocate for better understanding and support for people living with chronic pain.

 ““Being part of the Pain to Power campaign reminded me that sharing our stories can be a form of advocacy. When we speak out, we not only empower ourselves—we help lift the silence for others.”

Moving Forward with Purpose

 “Chronic pain is complex but, with the right support, we don’t have to carry it alone.”