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Dear Lady Gaga: When You Speak About Fibromyalgia, Your Words Matter

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Lady Gaga,

When “Gaga: Five Foot Two” dropped on Netflix, I was intending to add it to my watch list. It was supposed to be next in line after the new season of “Bones,” because I really, really love “Bones.” Then, everything changed. I read that you had announced you have fibromyalgia. As a woman who battles fibromyalgia among other very painful chronic conditions like hypermobile Ehlers-Danlos syndrome, this intrigued me.

I decided to immediately suspend my “Bones marathon,” and mentioned to a friend that I was going home after work to watch “Gaga: Five Foot Two.” I knew Bryce is a huge fan, and would have watched it as soon as it dropped. He warned me that I’d cry. Being that I consider myself to be a pretty tough cookie, I thought maybe I’d get a little misty, but not full out cry.

I was so very wrong.

Watching the scenes with you in pain was very poignant for me. I can relate to the searing, exhausting pain of fibromyalgia. I can only describe it as feeling like every muscle and every nerve in my entire body is on fire, and that fire is never extinguished; the coals are always there, smoldering and smoking, just waiting to burst into flame again. Sometimes they burst into flickering short-lived flames that fizzle out after a few days. Sometimes they burst into a raging inferno that can burn for weeks or months at a time, refusing to be battled back until it feels like my entire world is consumed by unrelenting pain. I’ve even had times during a particularly vicious flare when it felt like my actual hair hurt. I can relate to not having one single day of my life where I am not in some degree of pain. I was a little misty watching it, but that’s not what made me cry.

You acknowledged us. You, the international superstar with boundless influence, said you thought about the people who were going through similar issues and didn’t have the quick access to cash to have people at the ready help them. While you wept, you described your pain in detail, and said your “fucking face hurts.” You told us you didn’t know what you “would fucking do” if you didn’t have access to a team to help manage your pain. As you were sobbing in pain, you put yourself in our shoes.

That, my dear Lady Gaga, is what made me cry. I was straight up bawling.

When I managed to collect myself, I thought that would be the end of it. I thought there would be no further ugly crying, but you hit me in the feels again in the doctor’s office.

You stated you’ve been chasing this pain for five years. Five entire years. That’s an awful long time to be in pain, with no answers. Unfortunately, it is an experience shared by many of us with invisible illnesses. You told us when you were getting your trigger point injections and saw the fluid buildup on the ultrasound screen, that this is what you’ve been waiting to see. You talked about spending three hours at a time in an MRI machine, and told to take ibuprofen. You essentially told us that you are us.

You, Lady Gaga, international superstar, winner of music awards around the world, and the most nominated artist in VMA history for a single year, have had to fight to have your pain taken seriously. Though it was left unsaid, I imagine you’ve had test upon test done, and most of them have come back “within normal limits” – which can be one of the most frustrating phrases to hear when you are chasing a diagnosis. You have been told to take OTC painkillers for searing full body pain.

I am confident that people have not believed you are in pain – partially because your performances are so high energy and physically demanding. You let us see that you have been essentially completing those tasks by shutting your emotions and perception of pain down while performing. You made the point that “when I feel the adrenaline of the fans and the music, I can fucking go… but that doesn’t mean I’m not in pain,” and admitted you were basically willing your body to perform. By saying those words, you made a very salient point – for chronic pain patients, what is presented on our exterior is not always reflective of the pain we are in.

I’ve always loved you as a performer, and think you are a very rare person. One who dares to be different. One who is courageous enough to wear a meat dress to the VMAs as a representation of women’s rights. One that doesn’t just live outside of the box that society tells us we should be in, but actively encourages us to step outside that box ourselves. You tell us no matter what, we aren’t just OK the way we are, we are so much more than just “OK.” You remind us we can all shine, that all we need to do is accept ourselves exactly the way we are. In this day and age, it is a message that is so very desperately needed.

I’ve been inspired by your music, especially “Born This Way,” which helped me accept my pain, accept my body and celebrate my differences. Every time I hear that song, I am reminded why I owe it to myself to own my uniqueness, and to live life on my own terms.

After watching “Gaga: Five Foot Two,” I have to admit I am less inspired by you Lady Gaga. While I still love you as a performer, it is not Lady Gaga who inspires me anymore.

I am far more inspired by Stefani Germanotta. I am inspired by the woman who put her pain and vulnerability on a worldwide platform. I am inspired by the woman who cried when fans cheered for her after performing “Angel Down” on the balcony of The Bitter End. I am inspired by the woman who wrote a song about her late aunt Joanne for her grandmother and father. I am inspired by the woman with such intense love for her family. I am inspired by the woman who empathizes with people who have less financial resources to treat their chronic pain, while you were in such intense pain yourself.

You brought your pain onto an international platform. You confirmed that you struggle with an often misunderstood, complex condition. The most admirable part? You willingly took your own very vulnerable, very private moments and distributed them for public consumption. You allowed us into those moments. By confirming your fibromyalgia diagnosis and letting us see your struggles, you’ve added your voice to ours – not to overshadow us, but to make all of our voices louder.

Yes Lady Gaga, your words matter.

Thank you for choosing to use those words to bring the issue of chronic pain to an international platform in a very unique, very relatable way.

Thank you for choosing to use those words to tell the world that you not only understand us, but you are one of us.

Thank you for choosing to use those words to empower us.

Thank you for choosing to use those words to remind us that even on our darkest, most painful days, we are not alone. 

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Originally published: October 13, 2017
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