The Good and Bad F-Words Fibromyalgia Has Brought Into My Life
To be honest, I have no idea how I’m going to feel once I truly accept the diagnosis and the fact that May 12th is now the one day everyone is supposed to “be aware” of neuroimmune diseases. I am aware of my disease every moment of every day.
I think about my fibromyalgia every time I rise from a chair to exit a meeting. Every time I attempt to twist a cap off a jar. Every time I want to walk my puppy for longer that day. Even when I try not to think about it – when I’m trying to binge on the entire series of Vanderpump Rules, not just an episode – my fibromyalgia is there to say, “Still here.”
Because it’s always present, fibro forces negative f-words into my life on a daily basis: frustration, fatigue, fibro/brain fog and fear. But more importantly, fibromyalgia fuels my passion to familiarize others with the impact it can have on quality of life, and to continue to fight for those who deserve more than just “the standard” treatment. I also go to work every day knowing I couldn’t feel more fulfilled elsewhere.
I know I can use this opportunity to bring light to both the difficult disease that fibro is and the lack of understanding around invisible chronic illnesses – so that’s what I hope to do, with your help. Social media is a powerful platform and community for chronic illness warriors of all types, but knowledge is ultimately the key to making progress in treating (and maybe even curing!) these diseases.
In the chronic illness community, there are two beliefs by which many patients live and consider when building connections:
1. You can’t fully comprehend the effects of chronic illness unless you experience it.
2. You don’t think of a rare disease as rare once it affects someone you care about.
As someone with a chronic illness, I agree with the above statements, but I also know this isn’t always the case. Each day when I come to work, I’m inspired by everyone around me. My colleagues infuse campaigns with a delicate mixture of emotion, data, creativity and tremendous empathy for what it must be like to endure a condition they may never have heard of before. This is the secret sauce to the standard (and life-changing) work we get to share with the world.
PrecisionEffect is a special place to work, apart from the fact that I feel extremely connected to the patients we reach and products we promote, because the work we generate evolves from everyone genuinely caring about it – as if the rare diseases and/or chronic illnesses affect us personally. And after a while, they truly do.
Coast to coast we collectively strive to improve disease management, the patient journey and the perception of the pharmaceutical and healthcare industry. We’re looking out for and reaching out to patients and caregivers who never imagined novel – or any – treatment options. As someone who now finds herself on “this side of the table,” I couldn’t fathom a more fulfilling role than the one I’m grateful to serve today at PrecisionEffect.
What I hope for is that we’re not an anomaly, and agencies out there like us will (eventually) put me on the other side of their table.
For now, I hope we as individuals can build awareness and encourage knowledge sharing around the impact of chronic illness – fibromyalgia in particular – on quality of life. While my symptoms can make it hard to physically get to work or concentrate long enough to write a 600-word blog post, they will never suppress my dedication to the amazing work we do for others. They motivate me to continue to raise my voice on behalf of those who may not know that someone out there is looking out for them.
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Thinkstock photo via Ingram Publishing.