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Dear Lupus and Dysautonomia

A woman emoting through dance to accompany a letter written to Dear Diagnosis - a literary project rooted in narrative medicine.

I wish I knew why you were given to me. I know I grew-up watching you, Lupus, destroy my mother, but never did I think you would come after me. Did I do something wrong? That’s how I feel – every snarky remark or white lie I told as a kid – feels like karma is the real deal now.

You know I remember what life was like before you tackled me, Dysautonomia. I had just started to feel like I was living on top of the world! My hair was full, my smile was bright and my passion of music and dance was strong. I was only 15 when you hit me in my heart, my dance! I’ll never forget going over that routine and suddenly hearing my heartbeat overcome every sound in that room. I swear everyone around was mumbling. At least that’s all I could make of it. I collapsed from feeling so much sudden fatigue, but you didn’t stop there. I crawled outside so everybody didn’t stop and stare. You lasted 4 hours that night; you made my heart beat fast, my vision blur, and every time I tried to get back up – my world became a giant slur. I swear it looked like everything had turned upside down in that moment. You began to break me down – little by little – every single time I flared. If it weren’t for that doctor who was willing to listen, I would’ve continued to be told I was going crazy. I might have assumed it myself…

I used to love watching paranormal shows. Through them I heard that once you found out the demon’s name, you could control their strength by using it – even pray them away. When my doctor came into the room that day saying your name – ‘Dystautonomia’ – I decided then and there that I would take your name and do the same to you. I guess you didn’t like that because that’s when you sent your friend, Lupus, to find my name. 

And find my name she did. She cornered me and stomped me down until I screamed, I give! I thought I knew pain, I thought I knew fear, I even thought I knew sadness but it was clear once she arrived – I did not… I’d been depressed before, but never like this.

What made it worse, I wouldn’t (couldn’t) look to my mom (who I always adored) because she suddenly embodied a future I wanted desperately to ignore. I saw her pain, I’d heard her cries through my bedroom wall. Little did she know, her bathroom (on the other side) was not a quiet place to vent. I brushed her hair as a kid; I held her hand when you – Lupus – attacked all that she could give. I thought I’d done my time with you through her but now, at age 19, you attacked my being!

I felt numb at your arrival. I didn’t want to sing anymore… But I wanted to dance. All I could do was dance. You see, through dance, I could express what I felt without actually admitting just how much pain I was in.

Wanna know something funny? I eventually started to find strength in you, Lupus. I started seeing my mother in myself – a strong, unapologetic fighter – doing all I could before the idea of both you took hold. But, you could sense it, couldn’t you? Because that’s about the time that the both of you paired-up to beat the crap out of me at the very moment that I thought to out-think you. To change the way I thought about you. And I almost admit your success – it many ways it worked. My blood work definitely showed muscle break down from how hard you hurt me at that point in time…

These, though, are the last words I want you both to hear me say: Go ahead and take me down – push on my kidneys, even my heart and my memory if you must. But, I promise each time I will get up! I will keep fighting in my own way. Every time I finish dancing or singing through your pain, I will be sure to thank you. Because of you, I’ve realized that nothing will stop me for my art. You have made me the artist that I am today. You have helped me see the light in my dreams, the strength in my genes. So try and take me down – I dare youbecause I promise, you won’t win!

When I make it big, I’ll be sure to show the world – all of my fellow chronic disease friends (the ones whose conditions can’t be seen from the outside), along with every person that has ever doubted my strength that you – Lupus – and you – Dystautonomia – are just a couple of ants ready to be squished! That’s right – thank you – I have won, will win, am winning, not in spite of you but because of you.

Female, Age 21
Lupus & Dysautonomia

Dear Diagnosis Affirmation Key

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