Fibromyalgia is a complicated illness that affects more than 5 million adults* (this number does not include those individuals not properly diagnosed), and there are many more suffering in silence. Despite the millions being affected by this chronic condition, the research is lacking, and this directly affects the healthcare fibromyalgia patients receive. In an effort to improve the lives of fibromyalgia patients, I’m asking for the fibromyalgia community to shine a purple light during the month of May’s Shine for Fibro campaign.
What is Fibromyalgia?
According to the Support Fibromyalgia Network:
Fibromyalgia is a chronic (long-term) neurological health problem that causes widespread pain and tenderness (sensitivity to touch), fatigue, unrefreshed sleep, and cognitive problems. There is no cure and no one-size-fits-all Fibromyalgia treatment. A multidimensional treatment approach is necessary. It’s believed that over 5 million people in the U.S. have been diagnosed with Fibromyalgia.
To make matters worse, fibromyalgia has co-morbidities such as autoimmune conditions. This causes it to become difficult to manage symptoms and receive proper healthcare. The result is fibromyalgia patients live a lower quality of life, have poor mental health, have higher risks of developing other chronic conditions, and more. In some cases, people living with fibromyalgia have committed suicide or sustained other injuries.
Fibromyalgia Thirty Years Ago to Today
My mom was diagnosed with fibromyalgia in the 1990s when it was becoming known in the medical community. People have been living with it for centuries, but in the mid to late nineties is when it was surfacing in medical offices. That’s not to say it was accepted as a diagnosis or even considered a ‘real’ condition. Quite the contrary – it was being stigmatized and becoming a ‘catch-all’ diagnosis. This means that if the doctor couldn’t find anything else wrong with you, then they slapped you with the ‘fibromyalgia’ diagnosis.
To add insult to injury, the symptoms of fibromyalgia aren’t physical manifestations, so there is no way to ‘see’ it. There certainly wasn’t a way to get a firm yes or no if someone was living with it. Physicians were skeptical of it (some still are) and thought it was a way to seek attention from others.
Here it is thirty years later, and we still are nowhere near where we need to be with fibromyalgia. There is little amount of research about it which leads to a severe lack of information for everyone including medical providers, patients, and national organizations (CDC, NIH, etc.). This results in either not getting a proper diagnosis or an extreme delay in getting a diagnosis. It also means there are limited treatment options for symptom management. Either way, the patients are the ones who suffer the most – physically and mentally.
It’s important to know there are plenty of fibromyalgia resources at your fingertips. Here are some great places to start.
What can we do for fibromyalgia to be taken seriously?
Two powerful words: awareness and advocacy. Plain and simple. What is awareness? In simplest terms, awareness brings attention to an existing problem. Advocacy is taking action on the awareness (problem/issue). The two must coexist to make changes where it’s needed. One simply cannot exist without the other if it’s meant to make a difference. You can read more about our advocacy efforts at the Support Fibromyalgia Network.
Interested in Advocacy for Fibromyalgia?
Advocacy comes in various forms and anyone can do it. Most likely you’re already an advocate and don’t even know it. Learn about all the advocacy work that has been done in the fibromyalgia community.
Surprisingly (but not surprising when digging deeper into it), many awareness campaigns fail to do what it’s meant to do. It’s not because of a lack of effort, but because the campaign does not create action items in relation to awareness. The action item is what drives the awareness, and the awareness pushes the action item. So, if one fails, it’s because the other was missing. Do you see the cycle of awareness and advocacy?
Shine For Fibro
May is Fibromyalgia Awareness, so during the month of May, I’m asking all fibromyalgia fighters, caregivers, medical providers, and supporters to shine a purple light. Shining a purple light shows others that we accept fibromyalgia as a real illness, we are not ashamed of it, and we proudly support those living with it.
We shine a purple light…
…to show that fibromyalgia is real.
…as a beacon of understanding and support to all of those affected by fibromyalgia.
…to show that no one fights alone. We fight together as a community.
…on fibromyalgia awareness and advocacy.
…on the path we are forging towards positive changes.
…for all the ones we have lost.
Personally, when I shine a purple light, it’s my way of saying to others, “I have fibromyalgia. I understand your struggle. We are in this together.”
Ways to Shine a Purple Light
There are several ways you can shine a purple light in a fun and creative way! Find all these products and more on my Amazon Shine For Fibro idea list.
Want to participate in Shine for Fibro?
The more people we have participating in this campaign, the bigger impact it will make for fibromyalgia awareness and advocacy. There are several ways to participate in Shine for Fibro. This is the awareness part of this campaign. Ways to participate include:
~ Shining your purple light. Take it a step further by sharing your photo using the hashtag #ShineForFibro
~ Sharing your fibro story. This can be sharing it online from your personal social media or sending it to me at the Support Fibromyalgia Network for us to share it on our social media platforms. You can submit a written or video of your fibro story. Submit your story here.
~ Coloring a Shine for Fibro coloring sheet. Print out a coloring sheet for you and/or your kiddos. Coloring is a great way to spend time with your kiddos in a low-impact way. Check out these benefits of coloring! I also recommend a collection of coloring books (for adults and children) and supplies on my Journaling and Coloring Amazon idea list. Snap a photo and share it using the hashtag #ShineForFibro
How to Make Shine for Fibro Successful
To make an awareness campaign successful, an action item needs to be asked of those individuals participating in the campaign – the audience. What is the audience being asked to do with the awareness? This is what makes awareness and advocacy come together: taking action with the information of the awareness campaign. Read the complete list of action items for fibromyalgia awareness.
There are several action items each of us can do for Shine for Fibro. This is the advocacy of this campaign and will make the campaign more successful if each of us did just one item from the list.
~ Share information about fibromyalgia and actions that can be taken to support someone with fibromyalgia. There are lots of images on the Being Fibro Mom Facebook page and the Being Fibro Mom Instagram profile.
~ Communicate about living with fibromyalgia whether you are the fibromyalgia patient, caregiver, friend, or family member. Letting others know that they are not alone and that others are willing to fight for self-preservation will give them the courage to help them in thriving fibromyalgia. Here are some tips about effectively communicating about your condition.
~ Share this campaign with your local leaders and officials. There are many people who are not aware of fibromyalgia, let alone the awareness of it. Send them an email asking for their support about fibromyalgia by participating in the campaign. They can either shine a purple light for your community or share it online.
~ List the ways of supporting someone with fibromyalgia and share it online along with this campaign.
~ Support someone you know living with fibromyalgia. Check out this article How to Support Someone with a Chronic Illness.
~ Share information about local fibromyalgia support groups. Gathering and distributing information about local groups can be valuable to someone that may not know how to retrieve that information.
~ When talking with someone that has fibromyalgia, be open-minded about their illness. Show genuine interest in what they are saying by using positive body language such as making eye contact and not crossing your arms. Being sympathetic, not pitying, can make a difference to someone suffering from fibromyalgia.
~ Host an event virtually or in person. For example, host a potluck in your community and invite local fibromyalgia fighters and their families or have a video call with a group of people affected by fibromyalgia. Providing literature or other information about fibromyalgia is great, but not a necessity. Having a social gathering rather it is online or in person encourages talking about fibromyalgia. This helps to establish the foundations of an effective support system within the community.
Take the first step!
Here’s a way you can take the first step in participating in this awareness campaign. Share the image below on social media (you don’t have to include a link to this post) and use the hashtags #SupportFibro #ShineForFibro in the post. Feel free to tag either Being Fibro Mom and/or Support Fibromyalgia Network!
To send us your story and have it shared on social media on Being Fibro Mom and/or Support Fibromyalgia Network, click here. Thank you for sharing!