Dear Juliet,

Living in the shadow of pain will make you question everything about yourself, your choices and the people you let into your life. It will make you feel doubt, hesitate to trust, isolate yourself, and wonder if your pain is some kind of punishment for mistakes you made in the past. It's okay to feel all those things.

You will need to teach yourself how to step into the light, because the other option is to drown in darkness. In fact, for a moment, you will flounder in the darkness of depression. Physical pain can open the door for emotional pain when it stays too long.

It will stay too long. Lupus is a long term chronic illness. At first, you will hope that the pain will go away. You will hop from doctor to doctor, diagnosis after diagnosis in an effort to chase away the pain of migraines. Then you will be told that the accompanying fatigue that never ends is because of Myalgic Encephalopathy, what is called Chronic Fatigue Syndrome. You will keep looking for a solution, even when life calls out to you from beyond the window.

You will attempt to live life, get an education, get a job, get a love life, and it will often seem like you cannot do anything right. The symptoms of the mysterious illness will keep dragging you back to step one. You will often start college course work and never get to the end. You will get jobs because you are brilliant enough for your skills to be needed, but time and time again, you will have to retreat to recover from one illness or another. You will lose friends, and lovers because you are ‘high maintenance'.

Eventually you will get a diagnosis that seems like a revelation but doesn’t give you much in the way of answers. Lupus is great at hiding behind bushes and waiting for you to think you can take a walk in the garden. Then it jumps out and yells ‘boo!’ and watches with glee as you fumble, stumble and roll all the way down to the bottom hill. You will get up and climb up the hill to try and get back to the beautiful garden. In fact, you will surprise yourself with your resilience. You will always get back up.

That’s not to say that you won’t worry about your mortality. You will wake up in horrid Lupus pain in the middle of the night and wonder if this is how you will die. Every news item about someone with Lupus who gets to the end of their battle will break you. You will grieve for Lupus patients you don’t even know.

Learn how to use that pain to propel you into the light. Let it show you how to care for yourself better. Let it show you how to love the people who choose to be there for you. Let it show you how to be kind to those who are where you have been and have no idea how to find the light. Let the pain show you how to be alive.

And when all these toothache-sweet motivational words just drive you mad because they don’t seem to take into account that the pain strips everything away, just take one step at a time. One day at a time.

I’ll be here waiting for you.

Future Juliet

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