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. To improve the lives of fibromyalgia patients, I’m asking for the fibromyalgia community to shine a purple light during May’s Shine for Fibro campaign.

What is Fibromyalgia?

According to the Fibromyalgia National Health Organization:

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 lived with it for centuries, but it surfaced in medical offices in the mid to late nineties. It was not accepted as a diagnosis or 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 lived 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 research about it, leading 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.

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 to increase awareness (problem/issue). The two must coexist to make changes where they are needed. One cannot exist without the other if it’s meant to make a difference. Read more about our advocacy efforts.

Fibromyalgia Awareness

Surprisingly (but not surprising when digging deeper into it), many awareness campaigns fail to do what they’re meant to do. It’s not because of a lack of effort but because the campaign does not create action items related to awareness. The action item drives the awareness, and the awareness pushes the action item. So, if one fails, it’s because the other is missing. Do you see the cycle of awareness and advocacy?

Shine For Fibro

May is Fibromyalgia Awareness Month, so 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 fun and creative ways to shine a purple light! My Amazon Shine For Fibro idea list includes all these products and more.

The more people we have participating in this campaign, the more significant its impact on 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. You can share it online from your personal social media or send it to me at the Support Fibromyalgia Network for us to share on our social media platforms. You can submit a written or video version of your fibro story.

~ 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 participating – 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.

Each of us can take several action items for Shine for Fibro. This campaign advocates for fibro, and it would be more successful if each of us took just one item from the list.

~ Share information about fibromyalgia and actions that can be taken to support someone with it.

~ 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. Many people 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 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 who may not know how to retrieve it.

~ When talking with someone who has fibromyalgia, be open-minded about their illness. Show genuine interest in what they say using positive body language, such as 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, whether online or in person, encourages talking about fibromyalgia. This helps establish the foundations of an effective support system within the community.