About Brandi

My Work in the Fibromyalgia Community

Getting Diagnosed

In the six years between the onset of symptoms and diagnosis, I suffered physically and mentally. I found myself in a dark place, feeling like a failure to my kids and myself. At the time, I had four children under the age of six, and it was taking every ounce of energy to care for them. I wanted a better quality of life for them and me, but I didn’t know how. Read my full fibro story here.

I turned to the online community to help navigate parenting and fibromyalgia, but there was an overwhelming amount of misinformation about fibromyalgia and virtually nothing about parenting with fibromyalgia. It left me feeling alone and hopeless. Once I created my blog, Being Fibro Mom, in 2013, I felt hopeful. It was an opportunity to create positive change in our community for parents suffering just as I was.

Creation of Being Fibro Mom

Initially, Being Fibro Mom was a way to connect with other parents/caregivers living with fibromyalgia and share my experiences as I worked through it. I’ve shared everything from my many failures to embarrassing moments to overall successes. The intention was to share my struggles as a fibro mom in an effort to connect with other fibro parents. My hope was that we could help one another find strategies for parenting and managing symptoms to be the parents we ultimately wanted to be.

My willingness to share my experiences allowed me to create valuable content about fibromyalgia parenting to share on my blog and social media channels. Content includes informative resources, how to advocate for health needs, and tips for parenting with fibromyalgia. I also share strategies on how to effectively manage symptoms, flares, cooking for a family, and other demands of being a parent.

Because fibromyalgia parenting is difficult, I find fun and creative ways to engage the entire family through my articles, social media posts, and videos. It has proven to help fibromyalgia parents be the parents they want to be without fibromyalgia holding them down. It takes time to figure out what works best for each person and their family, but it is possible to minimize the struggle.

Fibromyalgia Parenting

After the blog’s success took off, I created a private Facebook group ‘Fibro Parenting’ to better connect fibromyalgia parents and caregivers in a supportive and positive atmosphere. There are currently over 1,000 members (and growing) from the US and various countries worldwide.

‘Fibro parenting’ is a term I coined several years ago when I created Being Fibro Mom. It is short for ‘fibromyalgia parenting’ and is used for any parent or guardian living with fibromyalgia. You can find relevant content by searching the hashtag #fibroparenting or #fibromyalgiaparenting .

Over the years I’ve learned that it IS possible to raise a family while living with fibromyalgia – without the constant struggle. It’s not always sunshine and rainbows, by any means, but it’s a lot easier now than it was all those years ago. Because of the success of helping other fibro parents, I created an entire website dedicated to fibromyalgia parents – Fibromyalgia Parenting. This is where we learn to embrace our parenting journey with confidence, strength, and resilience.

Advocacy

Little did I realize that my blog would ultimately become the first step on my advocacy journey. So when Melissa Talwar and I founded the Support Fibromyalgia Network in 2017, it gave us a chance to become properly trained as an advocate and learn the inner workings of advocacy on the grass-roots and federal levels. This opportunity coupled with my experience as a fibromyalgia patient and mom gave me the skills to help with implementing the changes needed in the fibromyalgia community.

As the program director for Families & Fibromyalgia, I focus on bridging the gap between those individuals living with fibromyalgia and their loved ones. Living with fibromyalgia is difficult, and having a support system is crucial in healing. Together we are building an effective support network that gives the resources and expertise many fibro thrivers and their loved ones need.