One of the hardest parts of living with fibromyalgia for me was telling others about it. Shortly after receiving the diagnosis, I knew I would have to face two inevitable facts: 1. Accept the diagnosis and learn to adjust my life to living with a chronic condition, and 2. In order to properly manage my symptoms, I would need to tell my loved ones about fibromyalgia and how it affects me. Ravyn’s Doll is a fibromyalgia awareness campaign that can help with both of those tasks.
Scroll down to see the promotion video of the Ravyn’s Doll campaign and to watch the Fibro Live show.#RavynsDoll is spreading #fibromyalgia awareness! Find out how you can join at www.RavynsDoll.com #FibroLive Click To Tweet
This article first appeared in The Fibromyalgia Magazine, May 2018. Get the digital copy of the magazine from Pocketmags.
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Acceptance is a Challenge
These two tasks are a perfect example of the clichéd saying ‘easier said than done’. It does sound easy though, doesn’t it? In reality, it’s far from easy. When I was first faced with my diagnosis, I slipped into a sort of depressive state. It was difficult for me to go from an active, fully engaged person to…well, the opposite of that.
If acceptance was challenging, telling my loved ones was nearly impossible. No, it’s not a necessity to tell others I’m living with fibromyalgia, but it sure helps. There are days when I need help physically, emotionally, or mentally. If I don’t tell those closest to me, how would they know when or how to help me? That left me with the question –
How do I tell others about fibromyalgia?
To add on top of the frustration, there were – and still are – negative perceptions, stigmas, and myths surrounding the illness. There is a vast majority of individuals – medical professionals included – that deny the existence of fibromyalgia. So much so, that in the six years prior to my diagnosis, various physicians didn’t even acknowledge my symptoms at all. Each of them told me there was nothing wrong with me, that I was facing the perils of being a new mommy, and to quote one doctor – ‘suck it up’.
How can anyone begin healing when it seems as though the world doesn’t believe they are ill?
Fast forward years later, and I’m still struggling with this question. A majority of my work with the International Support Fibromyalgia Network (ISFN) and as a writer for the fibromyalgia community has been about getting others to understand fibromyalgia and to get acknowledgment that our suffering is real.
However, thanks to a wonderful story told by Melissa Swanson about a girl and her doll, together with the amazing individuals at the ISFN, there’s a way we can gain that acknowledgment. One that will improve the lives of those living with fibromyalgia.
Meet the author of Ravyn’s Doll
Melissa Swanson is a chronic pain patient and a Certified Fibromyalgia Advisor through the International Fibromyalgia Coaching Institute. In addition to her blog, Fibro Warriors ~ Living Life, she writes for ProHealth.com and is the ISFN Advocacy program director. And, most importantly for this article’s purpose, she is the author of Ravyn’s Doll: How to Explain Fibromyalgia to Your Child.
The story of Ravyn’s Doll
Ravyn’s Doll is the story of Ravyn, a little girl in kindergarten, who has been asked to create a paper doll patient while learning about health. The paper doll is to represent someone they love who is hurt or sick. All of Ravyn’s classmates create dolls that are visibly sick or hurt. When it’s Ravyn’s turn to share her paper doll, everyone is surprised. Her doll looks like there is nothing wrong!
Ravyn tells her class that her mom may look healthy, but she has an illness you cannot see from the outside called fibromyalgia (fi-bro-my-al-juh). She goes on to explain how her mom hurts all the time, so Ravyn has to be gentle when they hug. She also says her mom gets tired a lot and needs a nap so that they can play together. Her classmates learn that fibromyalgia causes other medical problems, too, and that there is no cure for fibromyalgia. Ravyn says her mom is a brave fibro warrior, and her classmates eagerly agree.
The impact of Ravyn’s Doll
From the moment I saw the cover of Ravyn’s Doll, I knew I was going to love it. What I didn’t know was its positive impact on families and how much it would help parents explain their illness to their children. It’s important for our kids to understand why we have difficulty doing what they would like us to do. Using the school setting as a teaching environment along with the likable characters and vibrant colors was a brilliant idea.
This children’s book starts an ongoing conversation about fibromyalgia between parent and child. The simplicity of the story allows the child to understand the basics of an invisible illness. And my thinking is, if Ravyn’s Doll can help children understand fibromyalgia, why can’t she help others? This is the moment where the solution to a frustrating dilemma was developed.
Ravyn’s Doll is Spreading Fibromyalgia Awareness
The Ravyn’s Doll Campaign is Born
One afternoon while zoned out eating a bowl of something I can’t remember, I was thinking about all the people I’ve met through the work of my blog, Being Fibro Mom. I’ve connected with some pretty incredible people living around the world. The stories vary person to person, but one thing is always the same: an overwhelming cry for help. That cry has always been too loud to ignore and is my motivation to push forward with my work.
While in that moment of thought, a few questions crossed my mind. How do we get people to share their stories? And how do we get people to hear those stories? More importantly, how can we get others to understand fibromyalgia or what it’s like? Then some brain fog cleared and that’s when I realized that Ravyn’s Doll can help others understand fibromyalgia!
By modifying an existing method of storytelling, I would ask others to share their stories just as Ravyn did to her class, but this time the world could hear them, too. The overall thought process was simple: Send a laminated copy of Ravyn’s paper doll to other fibromyalgia patients and ask them to share their story via photo and/or video on social media using a specific hashtag. It would be a way for us to help others understand fibromyalgia by showing how the illness has affected our lives. With some research and work, Ravyn’s Doll could be the awareness campaign the fibromyalgia community needs.
I excitedly shared my thoughts of the campaign and overall concept to Melissa Talwar, the founder and president of Support Fibro Network. She also thought it had potential to be an awareness campaign, so we went to Melissa Swanson with it. The campaign was agreed, and the work of making this an effective campaign began.
How Ravyn’s Doll Can Raise Awareness
The more people share about fibromyalgia, the more others will learn about the illness and begin to truly understand. As others begin to understand, the more knowledge can be learned and maybe one day we could improve the lives of those living with fibromyalgia.
By sharing stories, we could accomplish a few things:
- Raise awareness of fibromyalgia in order to make the needed changes in medical policies, patient care, and support groups.
- Encourage fibromyalgia patients to start an ongoing conversation between themselves and their loved ones to improve their support system.
- Increase support and knowledge for the fibro community.
Who can participate in Ravyn’s Doll?
Anyone connected to the fibromyalgia community – a fibromyalgia patient, patients’ family and friends, medical professional, celebrity, researcher, community leader, or politician – is encouraged to participate.
How to participate in Ravyn’s Doll
Three simple steps:
- Tell your story. Take a photo or video with Ravyn’s Doll and share your fibromyalgia story.
- Share it. Send your story, photo, and/or video to Melissa Swanson at firstname.lastname@example.org. She will share it at www.RavynsDoll.com OR you can share it on social media using #RavynsDoll.
- Pass it along. Pass Ravyn’s Doll and the letter from Ravyn to a friend living with fibromyalgia, someone who knows about fibromyalgia, or a caregiver of a fibromyalgia patient. Don’t forget – a caregiver can be a loved one, friend, doctor, or nurse!
How to get started
Not sure where to start sharing your story or where to take Ravyn’s Doll? No problem! Here are some suggestions of where you can take Ravyn’s Doll:
- At home (when you feel well and not so well)
- Medical appointments
- Fibromyalgia events
- Wherever you want to go!
A few prompts to help you get started:
- How does fibromyalgia affect your life?
- What is one thing you want others to know about living with fibromyalgia?
- It is hardest when…?
- What helps you cope with fibromyalgia?
- What would you like to have changed in the medical field regarding fibromyalgia?
- What is it like being a caregiver? (if it applies)
- If you are a friend of someone living with fibromyalgia, how do you give support? What would you like to know more about? What is it like for you as a friend of someone living with fibromyalgia?
To learn more about the Ravyn’s Doll campaign or to request a doll, please visit www.RavynsDoll.com. A copy of Ravyn’s Doll: how to explain fibromyalgia to your child can also be found on the Ravyn’s Doll website.
To learn more about the International Support Fibromyalgia Network, please visit www.SupportFibro.org.