My Playlist That Describes Life With Ehlers-Danlos Syndrome

I love to listen to music and have songs in my head all day. Relating songs to my life makes it easier in a way, so I thought I would share the songs that get me through each day.

“Scars to Your Beautiful” by Alessia Cara

Alessia Cara really makes me identify myself with the song, especially when I get up in the morning and the pain is unbearable, my face is swelled up, I’m soaking from the night sweats and my heart is playing games with me again. I try to focus and tell myself: clean yourself up, put your face on, cover up the bruises and scars and get to work without fainting. That’s my daily mission.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

I hear in my head the lyrics from the song, “So she tries to cover up her pain and cut her woes away / ‘Cause cover girls don’t cry after their face is made,” and it’s true. Once I put that face on and set out the door, I pretend to be well because no one wants to see a sick person. People just see you as an inconvenience or no fun. I want to be “normal.” I want a cure, an answer. I pretend I’m not sick not just for them, but for myself as well. I will probably have to live with this for the rest of my life so I have to try to carry on. When you have an illness that is not going to get better, you find yourself in a circle of people saying, “Well they have to do something, they can’t just leave you like this.” You start thinking, “Why me?” – especially once the high of actually having a diagnosis fades and the reality of it not meaning anything because doctors still can’t do anything settles in.

“Numb” by Usher

What I have to accept – and so do others – is yes, they can just leave me like this. Doctors don’t always cure you, and I might be ill forever. Maybe I’ll get a bit better or maybe not, but right now it seems like forever. Getting to this point is when “Numb” by Usher slips in, especially the part where he says, “If you don’t recognize what is real then forever is a long, long, long, long, long, long, long, long time.” It’s true: fighting this reality will only make forever seem longer. He goes on to sing, “Some things never change here we go again / Feels like I’m losing my mind / Shake it off, let it go, I don’t care any more / Just go numb,” and yes, that’s exactly how I feel – numb from all the pain and mix of emotions. I guess you just have to let it go and stop fighting a fight you’re not going to win.

“Just Hold On” by Louis Tomlinson and Steve Aoki

That’s when the lyrics from “Just Hold On” by Louis Tomlinson fall in to my head: “Wish that you could build a time machine / So you could see the things no one can see / Feels like you’re standing on the edge / Looking at the stars and wishing you were them / What do you do when a chapter ends?‬ / ‪Do you close the book and never read it again?‬ ‪/ Where do you go when your story’s done?‬ / You can be who you were or who you’ll become‬.” That last sentence says it all. Maybe if I accept this new chapter and stop fighting it, the person I will become will be better than who I was – but because I’m staring at the stars wishing I was them, it never happens.

“I Lived” by One Republic

Learn to accept and try to live to the fullest. That’s when this song from One Republic helps me decide to change my mood and try to live again. It’s what I wish for: I want to learn to accept my illness and enjoy life with it, make the most of every broken bone, and that when my moment comes, I have done it all – I owned every second this life could give.

“Demons” by Imagine Dragons

And finally a bit of Imagine Dragons to boost my confidence and remind me we all have our own demons. There is no such thing as normal – everyone goes through hard times and right now is one of mine. There will be more and I will make it through them all. We all will.

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Thinkstock photo by m-gucci