The Power of Sharing Our Fibromyalgia Stories

In the past, many people living with fibromyalgia hid their diagnosis due to the stigmas previously associated with this nervous system disorder. I am extremely proud of what our generation has accomplished thus far. We are bringing fibromyalgia (FM) to the spotlight. Through our advocacy effort fibromyalgia got its own ICD-10 Code and a blood test to diagnose FM was developed. We are standing up and will no longer accept hateful labels to keep us hidden behind a wall of shame. The community is uniting and I am empowered hearing from people all across the globe who want to join the movement. This provides me with hope and assures me that we will succeed in reaching the numbers required to enact change. We are multiplying and our voices are amplifying!

• What is Fibromyalgia?
• What Are Common Fibromyalgia Symptoms?

However, some of us are still bed ridden, being held hostage by depression and limiting ourselves from reaching our full potential. For some, it is a result of not dealing with the emotional trauma that caused or came as a result of our diagnosis. Many of us have survived chronic trauma and I am proud of every single one of us that did! But I want better for me, you and future generations. I want us to reach our greatest potential. The stories I hear of abuse and trauma are heart-wrenching. However, they serve as testaments to how strong, fearless and courageous we really are. That is why I know that we are capable of managing fibromyalgia and finding a new normal where we are able to thrive and flourish.

Before I proceed, I think it is important to be clear on a few things, especially for any family or friends who may be reading this and want to help that special someone living with fibromyalgia in their life:

1. Not everyone living with fibromyalgia has been abused. For some, physical accidents and/or serving in our armed forces are other reasons that may have lead to an overactive, compromised nervous system.

2. If you are a person living with fibromyalgia and feel compelled to share your story, please make sure you have done the work needed to do so or have the tools available and at your disposal in the event that it triggers past hurtful emotions. Reliving past hurt is very personal and can be an extremely painful process. Some of us may require external help from a professional, clergy member or friend.

3. People living with fibromyalgia will not be healed by simply sharing their story or dealing with past trauma. Our nervous systems have been compromised and it will take a whole body and mind approach to manage the disorder.

4. Some of us may need to deal with the chronic suppressed trauma first in order to later learn how to manage fibromyalgia and its evil sidekicks. Managing fibromyalgia takes an individual approach, it is not one size fits all.

My fibromyalgia diagnosis came as a result of abuse and trauma. I didn’t address the trauma because I knew doing so would trigger the painful emotions that I had suppressed for decades. So instead, I held on to it, put it all in the back of my head and worked myself into a nervous breakdown. Keeping myself busy didn’t allow time to think, it was my way of ignoring the trauma. This domino effect approach caused more trauma and reared a different face of ugly. The ugly brought me closer to my faith. It reminded me of the power in spiritual connections and the healing work that takes place when sharing our stories. It is through our stories of survival that others who maybe struggling know they are not alone. It forced me to sit quietly by a lake, stare at a beautiful cathedral and deal with three decades of trauma. One day, it caused me to run up a hill towards the cathedral and notice that somewhere between New York City and Newark, New Jersey, lived the permits office I had visited multiple times when planning our annual Caterpillar Run. The view at the top of the stairs was amazing and brought me to tears. How could I have missed this, I thought? The strongholds from past trauma, toxic relationships and people with ugly hearts was causing me to miss out on all the beauty the world had to offer. I was sure at that moment of two things: I was undergoing a spiritual awakening and I only wanted to see the beauty moving forward. There was work to do and it would not be easy. I had to start at the beginning but I had bottled up things for so long, I did not even remember where it all began. I was unemployed and did not have health insurance so seeking outside help was not an option at the time. The lake and cathedral brought me peace but I needed to figure out how to unleash the trauma once and for all. As I sat quietly meditating on my couch at home, a voice whispered in my ear “Lake Side.” It was then that I was reminded that my trauma began when Bronx Family Court sent me to Lakeside School in Spring Valley, New York. I was 13 years young at the time. I am not exaggerating when I tell you that rivers of tears came strolling down my face that morning. I never realized that moment in time hurt me so deeply, but apparently it did and I had blocked it all out. The voice that whispered in my ear knew that I had to be liberated from the pain that was inflicted 36 years ago. It knew that I wanted and deserved to see the beauty of the world once again. I knew that I had some difficult work to do in order to unload years of trauma. I would need to free myself from toxic people, some which I loved dearly. I had to forgive some people who hurt me and mend those broken relationships. I had to learn how to breathe, sing and dance through it all. I had to develop a close relationship with the cathedral that brought me peace in the midst of a pandemic and turmoil.

If you are a person living with fibromyalgia inflicted by abuse and chronic trauma, I would love to share your story of unloading trauma and finding peace in your life.