Fibromyalgia: Need for health literacy and support
Diseases
Chronic Pain, Mental Health
Issues and Challenges
Brandi has encountered: Access to Expert Providers, Invisible Illness, Veterans Affairs
My Story
I’m a fibromyalgia advocate, blogger, and work-from-home mom passionate about helping parents living with fibromyalgia to better care for themselves and their families.
In early 2006, shortly after the birth of my oldest son, I had a sudden onset of symptoms: chronic back pain, all-over body aches, all-day fatigue, joint stiffness, depression, increased anxiety, sensory sensitivities, cognitive issues, and painful gut issues. After multiple medical appointments, doctors told me there was nothing wrong with me. That the symptoms I was experiencing weren’t really symptoms at all, but rather the by-product of being a new mom, and I’d adjust to it. Eventually.
It made sense to me at the time. Prior to these symptoms, I was an able-bodied woman serving in the United States Navy as an electrician and was active daily with little to no health issues. So when I became a new mom and started failing in health at the same time, I believed the experts when they told me it was just parenthood. And worse yet – I believed all parents had the same experience I was having and I was simply too weak to handle it.
During the following six years, I became worse each day and suffered tremendous mental anguish. My family was feeling the effects, too, of my swiftly changing mood swings, constant crying, and inability to participate actively. I was physically present but mentally absent much of the time. It was no way to live, but I did the best I could to get through each day.
In late 2012, I decided I was not going to let these so-called ‘experts’ tell me there was nothing wrong with me when something was so clearly wrong. A few weeks later, I was diagnosed with fibromyalgia, depression, and generalized anxiety by a physician who was also living with fibromyalgia. She immediately identified what was wrong with me by looking through my medical chart and listening - truly listening - to what I told her. My life changed at that moment, and for the first time in a long time, I had a chance to get better and regain my former self.
I searched online for ways to manage my symptoms. Instead, I found a lot of misleading and confusing information, and there were little to no resources about raising a family while living with fibromyalgia. It was discouraging. I had no clue how I could successfully manage symptoms while being a parent. I felt powerless, confused, and overwhelmed each day. Not to mention the guilt of not being able to properly take care of my family. I had no one to turn to, and I felt utterly alone.
I decided to start sharing my experiences about being a mom and living with fibromyalgia. My hope was to find other parents struggling and share tips for coping with it. It would feel better knowing I wasn’t alone and had others to work through it together. This led to the creation of my blog, Being Fibro Mom, and I coined the term fibro parenting to describe parenting while living with fibromyalgia.
I’ve shared everything from my many failures to overall successes in terms of managing symptoms, parenting, and more. I’ve met some amazing fibro parents, and unintentionally became a voice and advocate of the fibromyalgia community along the way. It’s been an incredibly powerful and impactful journey.
My mission is to advocate for parents enduring the hardships of fibromyalgia and create a resourceful community of fibro parents so no one feels alone. Fibromyalgia doesn’t affect just the person living with it but rather the entire family. My hope is to help bring families together through knowledge, understanding, compassion, and healing.
It’s been a long and rough road since my onset of symptoms, but through my experiences, I’ve learned how to stand taller and stronger than ever. It’s not always sunshine and rainbows, but it is possible to raise a family while living with fibromyalgia without constant struggle.
My Motivation and Inspiration
Fibro parents and their families are my motivation and inspiration. All of our stories are foundationally the same and many parents feel alone in their condition. After feeling alone for so long in my pain and suffering, I refuse to let others feel the same. I’m determined to do what I can to help increase the availability of resources, improve the management of symptoms, and bring loved ones closer together. This is what continually pushes me to keep going.
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