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What I Want Lorde to Understand About Autoimmune Disease

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Dear Lorde,

First off, I want to start out by saying your music has literally seen me through all kinds of sh*t. It has seen me through my lonely sophomore year at university. But most important to me is that it has seen me through the last three which have been filled with emergency room visits, hospital stays, doctors’ appointments, and multiple surgeries. Song like “Bravado,” “Glory and Gore,” “Swinging Party,” and “Biting Down” helped me keep my head up and continue to fight. They are anthems for me. You may not have realized at the time, but you are connecting to a group of people who need fight songs. Who needs songs and music that make them feel like other people are pushing through. I know you didn’t mean to and these songs don’t have the same meaning to you but that’s the beauty of art. You make art and by making this art you connected with me, a person with an autoimmune disease.

That’s why I’m writing this letter to explain why your words — how you said being friends with famous people like Taylor Swift is “like having a friend with very specific allergies. There are certain places you can’t go together. Certain things you can’t do. There are these different sets of considerations within the friendship. It’s like having a friend with an autoimmune disease” — are hurtful to me.

I’m not writing to scold you or make you feel like you’re an awful person. I don’t know you but I don’t believe you could be an awful or cruel person. I just want to let you know where I’m coming from as a true and devoted fan. Every friendship has it own set of struggles. I have no doubt it can be difficult to be friends with Taylor Swift. She is always surrounded by the media. But being unable to escape the media and being unable to escape your body are two very different things. I don’t pretend to know what it is like for Taylor. You shouldn’t assume to know what it is like to be us.

What makes your statement hurtful is that everyone I know in the autoimmune disease community already feels extremely guilty. We feel bad for all the canceled plans, all the things we want to do but can’t. We feel extremely guilty because we aren’t the same people we once were and that others have to actively sacrifice and continued to decide to be our friends. I have been blessed with a loyal group of friends but even with that loyal group of friends there are times when I see them freeze because they don’t know what to say or do. There are times when I can see the frustration on their faces and I don’t know if tomorrow they will wake up and decide being my friend and dealing with my issues are too much for them.

I know we plan ahead when we go out and I know they get annoyed when we have been planning to go out for a month and the night comes and I can’t move from my bed. They try to hide it but I’ve seen it. I try to push all these thoughts to back of my mind but my body is constantly reminding me of my limitations. So for someone of your status and platform to validate that my limitation can be taxing on a friendship is a bit crushing.

I got my official diagnosis of Sjogren’s syndrome which is a systematic disease that can affect your joints and your organs. It’s mostly know for causing dry eyes and mouth which come with their own sets of complications like not being able to cry or swallow your favorite foods. So I’m new to this community. But I’m not new to these problems. They have been going on for a majority of my life. It was a relief to have answers in the form of my diagnosis but it was also devastating to know I would live like this forever. I know you said you f***ked up and that you are sorry, but I didn’t want you walk away from this without knowing why or what is wrong with your statement.

This does not change how I feel about you. I love you and your music. We all say things sometimes without understanding why these things can be hurtful. I know I’m guilty of this. I will still try to see you on your North American tour and mostly importantly if I’m having a bad flare day I will still blast “Liability” and “Liability Reprise” because even if you didn’t mean for it to be, it represents my feelings about my relationships now that I have this illness. So thank you for your beautiful music.

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Photo by Constanza.CH via Flickr

Originally published: June 21, 2017
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