This is my fight song
Take back my life song
Prove I'm alright song
My power's turned on
Starting right now I'll be strong
I'll play my fight song
And I don't really care if nobody else believes
'Cause I've still got a lot of fight left in me.
When Rachel Platten wrote this chorus, I'm sure she had no idea how many people in so many different situations it would touch. I think it's a perfect anthem for the rare disease community, and it's become my Elhers-Danlos Syndrome*(see below) Fight Song! When I first heard this song, my thoughts immediately went to my 30-year-long search for a diagnosis and the fight I had to keep up to find that diagnosis. I can't count on my fingers how many doctors told me there was nothing wrong with me, I was making it up, I was crazy or just malingering. After a while, amidst frustration and depression, you start thinking, "maybe they're right; maybe I am just imagining it..." But every flare-up brought the reality of the pain back into focus, and presented a double-edged sword: I want to find answers for my symptoms, and at least a prognosis if not a treatment, but I don't want to have yet another doctor tell me there's nothing wrong with me. I'm so thankful for the few doctors I have found who affirmed that what I was feeling was real even if they couldn't explain it. Although I got the diagnosis of EDS at age 16, I thought it was just a quirk that made me good at ballet. It hasn't been until the past year, thanks to an amazing pair of rheumatologists at the University of Pittsburgh Medical Center, that the pieces have finally fallen into place and my laundry list of seemingly random symptoms all fit together. Through all those years, though, there was a little fight song in the back of my mind that gave me the courage to live and the courage to keep fighting for my health. Now when I have a bad day, I close my eyes and sing this song to the EDS:
This is my fight song. I'm stronger than you, EDS, and even if you cause me physical disability, you can't take my spirit.
Take back my life song. For so long, managing my symptoms, bearing the frustration, and trying to find someone who would believe me and help me consumed all my time. I'm taking that back now, EDS! Even with the increasing symptoms and disability, this is my life.
Prove I'm alright song. It has been a difficult battle, and still is a battle managing my symptoms, but I've come through. A little battered, but I'm alright!
My power's turned on. I still have EDS and all the painful, disruptive symptoms I had before, and they're actually worse at the moment, knowing what's causing the pain, that this is not in my imagination, and that there are others like me gives me the power to keep fighting through.
I'll play my fight song, starting right now I'll be strong. My friends and family might be getting tired of my rare disease soap box by now, but I don't want others who are still searching to have to endure the frustration and depression that comes from having a rare, undiagnosed disease. I'm so thankful for those around that encouraged and gave me strength until I could turn my own power on, It's my turn to be that advocate now.
Cause I don't really care what nobody else believes. This takes some practice, but I don't care if EDS doesn't think I can fight through it, I have and I will and I'm stronger because of it.
'CAUSE I'VE GOT A LOT OF FIGHT LEFT IN ME!
This Rare Disease Day, whether you have a rare disease or are alongside someone with a rare disease, I challenge you to keep fighting and keep believing in yourself. You have a lot of fight left in you; find it!
* "Individuals with Ehlers-Danlos syndromes (EDS) have a genetic defect in their connective tissue, the tissue that provides support to many body parts such as the skin, muscles and ligaments. The fragile skin and unstable joints found in patients with EDS are the result of faulty or reduced amounts of collagen. Collagen is a protein, which acts as a "glue" in the body, adding strength and elasticity to connective tissue."
(Taken from: Ehlers-Danlos National Foundation. What is EDS? Retrieved March 2, 2016 from http://www.ednf.org/what-eds)
"Fight Song" by Rachel Platten, Columbia, 2015
Take back my life song
Prove I'm alright song
My power's turned on
Starting right now I'll be strong
I'll play my fight song
And I don't really care if nobody else believes
'Cause I've still got a lot of fight left in me.
When Rachel Platten wrote this chorus, I'm sure she had no idea how many people in so many different situations it would touch. I think it's a perfect anthem for the rare disease community, and it's become my Elhers-Danlos Syndrome*(see below) Fight Song! When I first heard this song, my thoughts immediately went to my 30-year-long search for a diagnosis and the fight I had to keep up to find that diagnosis. I can't count on my fingers how many doctors told me there was nothing wrong with me, I was making it up, I was crazy or just malingering. After a while, amidst frustration and depression, you start thinking, "maybe they're right; maybe I am just imagining it..." But every flare-up brought the reality of the pain back into focus, and presented a double-edged sword: I want to find answers for my symptoms, and at least a prognosis if not a treatment, but I don't want to have yet another doctor tell me there's nothing wrong with me. I'm so thankful for the few doctors I have found who affirmed that what I was feeling was real even if they couldn't explain it. Although I got the diagnosis of EDS at age 16, I thought it was just a quirk that made me good at ballet. It hasn't been until the past year, thanks to an amazing pair of rheumatologists at the University of Pittsburgh Medical Center, that the pieces have finally fallen into place and my laundry list of seemingly random symptoms all fit together. Through all those years, though, there was a little fight song in the back of my mind that gave me the courage to live and the courage to keep fighting for my health. Now when I have a bad day, I close my eyes and sing this song to the EDS:
This is my fight song. I'm stronger than you, EDS, and even if you cause me physical disability, you can't take my spirit.
Take back my life song. For so long, managing my symptoms, bearing the frustration, and trying to find someone who would believe me and help me consumed all my time. I'm taking that back now, EDS! Even with the increasing symptoms and disability, this is my life.
Prove I'm alright song. It has been a difficult battle, and still is a battle managing my symptoms, but I've come through. A little battered, but I'm alright!
My power's turned on. I still have EDS and all the painful, disruptive symptoms I had before, and they're actually worse at the moment, knowing what's causing the pain, that this is not in my imagination, and that there are others like me gives me the power to keep fighting through.
I'll play my fight song, starting right now I'll be strong. My friends and family might be getting tired of my rare disease soap box by now, but I don't want others who are still searching to have to endure the frustration and depression that comes from having a rare, undiagnosed disease. I'm so thankful for those around that encouraged and gave me strength until I could turn my own power on, It's my turn to be that advocate now.
Cause I don't really care what nobody else believes. This takes some practice, but I don't care if EDS doesn't think I can fight through it, I have and I will and I'm stronger because of it.
'CAUSE I'VE GOT A LOT OF FIGHT LEFT IN ME!
This Rare Disease Day, whether you have a rare disease or are alongside someone with a rare disease, I challenge you to keep fighting and keep believing in yourself. You have a lot of fight left in you; find it!
* "Individuals with Ehlers-Danlos syndromes (EDS) have a genetic defect in their connective tissue, the tissue that provides support to many body parts such as the skin, muscles and ligaments. The fragile skin and unstable joints found in patients with EDS are the result of faulty or reduced amounts of collagen. Collagen is a protein, which acts as a "glue" in the body, adding strength and elasticity to connective tissue."
(Taken from: Ehlers-Danlos National Foundation. What is EDS? Retrieved March 2, 2016 from http://www.ednf.org/what-eds)
"Fight Song" by Rachel Platten, Columbia, 2015
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