When I was first diagnosed with fibro, I had no idea what it was. Nor did anyone else. Any attempts at beginning to explain it would just leave people uttering their usual words of sympathy. Even though they were sincere, I deeply longed to be understood, for my pain and suffering to be felt and empathized.
But unfortunately, pain and fatigue aren't outwardly noticeable, and I felt ashamed of my lack of visual evidence of suffering. I kept a few friends close and would share my struggles with them, but I let much of my social circle disappear. It was just too difficult to be the one who was always canceling and had very little life to discuss.
As I have mentioned in previous posts like this one about friendships with fibro, losing friends after a chronic illness can be pretty common. Pain makes us want to isolate ourselves.
From the comfort of my bed, I would pour over blog posts from other women who had fibromyalgia and sob as they so eloquently and emotionally described my experience. It was beyond cathartic to read someone paint a picture of my life and fill me with words of hope. They SAW me inside and out. Their pain, trials, relationships, anguish, triumphs, and everything in between could have been my experience. Our whole life must be done differently, and these women knew that. Without meeting or even engaging with them, I would still feel less alone. While it's helpful, and even though I have built my career around becoming one of those support pillars, I want you to know what I wished I would have done differently and why.
My friends may not have understood initially, but I shouldn't have given up. Awareness doesn't happen unless each one of us does our part within our sphere of influence to get the word out. We can't expect everyone to empathize like I once desired, but we can help to educate. And what do you think is the most valuable piece of information you can give them?
A CDC fact sheet?
A research article?
A Web MD link?
My website address? (I mean, maybe this one, wink wink)
While each is great and contains helpful information, I am here to tell you there is nothing more powerful than YOUR STORY.
That's right. Unedited, in your own words, including whatever it is that you experience. While I love the Spoon Theory and think it's a great visual way of explaining our lack of control, increase in limitations, and dilemma to maintain a "normal" schedule, it's not the only, or even necessarily, best way for you to present your experience. Fibromyalgia is so nuanced that despite major similarities, there is an incredible range of experiences. The more people share their nuances, the greater it helps form a clearer picture for everyone. Also, the less "rare" it becomes. But why mainstream something only a small percentage of the world has?
We are one big community, and the more research dollars allocated towards funding research into fibromyalgia, the better! Fibro has been on the rise, but it has become increasingly diagnosed since the start of Covid, meaning there are more and more of us daily. I'm unsure where you are in your health journey, but mine was a long, long road to "remission." I couldn't find a fibro specialist in my area, let alone a single doctor who could give me a pathway forward.
If you just Google fibromyalgia disease, disorder, or syndrome and look at research from 2001 on, you can see how it has progressed. An article published (ironically) a decade ago in the Canadian Medical Association Journal titled Fibromyalgia: Evolving Concepts Over the Past 2 Decades discusses how, 30 years ago, the medical community hardly accepted it was real!¹ It goes on to describe the changes in diagnostic criteria and the data that supports non-pharmacological interventions as not only effective, but also an integral part of a comprehensive, individualized treatment plan. My favorite part is the clear call to disregard the fact that we look so normal, admittance that impairment for us is great, and the importance of workload adjustments to our schedule so that we aren't always in a burnout cycle!!
Can I get a WOO WOO!
Fast forward to the present day, and while it's still lacking, so much progress has been made in research, treatment, disability qualifications, best practices, and most importantly, a more comprehensive "what to expect" for the newly diagnosed. And let me be clear; I think things can get much better. Research is moving and shaking, but we need people fighting to get the research known and acted on. So what's left?
Here, I want to draw attention to an extraordinary group of people fighting the good fight. A group that, if you aren't a part of yet, you will want to join! Support Fibro is a patient-centered national nonprofit community of fibro warriors, healthcare providers, and researchers working hard to help legislators support more research and aid for all of us while putting it on the map. They host summits, educate, and advocate. So how can you help?
The first and easiest step is to share your story. I encourage you to share a social media post using the campaign below, but it needs to be more than one day. Don't be like me. Don't be ashamed to do your best to show up for yourself and be honest with others about what you fight daily. And if they look at you sideways, don't take it personally. We don't even understand what's happening with our bodies some days! The people in your life love you and care for you. Even if they can't see your pain, don't assume they don't believe you. Don't put on a brave face and say you are fine. Tell your story.
If you'd like to share your story, join the SHINE FOR FIBRO campaign started by a fellow fibro mom blogger, Being Fibro Mom. "May is our month to shine," as she says in her video below, "so put a purple bulb in the porch light, a purple candle in the window, or whatever way you choose to let your light shine."
If you'd like to do more or have a day where you feel completely at the mercy of the fibro beast, check out all the ways you can help. You can submit a proclamation, speak to Capitol Hill, or host a fundraiser.
1. Fitzcharles, M. A., Ste-Marie, P. A., Pereira, J. X., & Canadian Fibromyalgia Guidelines Committee (2013). Fibromyalgia: evolving concepts over the past 2 decades. CMAJ : Canadian Medical Association journal = journal de l'Association medicale canadienne, 185(13), E645–E651. https://doi.org/10.1503/cmaj.121414
