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What I Wish I Could Have Told My Newly Diagnosed Self

Hey. I know you’re feeling a lot of emotions right now, a lot of emotions that might not make sense for a while. You probably don’t want to listen to anything else because you feel like you’re drowning in new words and the world you once knew is breaking into pieces. But I need you to do something for me.  I need you to breathe. And I need you to listen. 

Let’s take a deep breath, okay? I know your heart is racing as fast as the thoughts that consume your mind, but let’s just try to breathe in, and breathe out. It’ll help. Hold onto that practice. It’ll come in handy.  

Before you freak out and your mind starts spinning in a million different directions, find that steady breathe again, and just hear me out.  

Your life is going to change, but you’re going to be okay.

Your life is going to change, but not entirely in the way that you think.  

Honestly, yeah. There are some things that are going to change for the worse. It wouldn’t be fair to lie to you. It’s not right to sugarcoat it, because that’s not reality, and that’s not how you’re going to grow. You’re not going to grow by shying away from the hard stuff. It’s going to suck sometimes. There will be a lot of doctor visits, a lot of doctor changes until you find one who will believe and listen to you.  There will be a lot of you being your own doctor and especially your own advocate. There will be a lot of tests run, a lot of blood drawn, a lot of nights and days spent in the bathroom or in bed.  

But amidst the pain and the tears, and amongst the ways in which, yes, your life will get harder, here’s what will get stronger: You. Your bravery. Your resiliency. Your power. Your appreciation for life. Your ability to empathize with others. Your knowledge about and intuition towards your body. YOUR body.  

So, with that in mind, here are a few things I need you to know: 

  • At first, you may feel like you’re the only person in the world who has this disease. You’re not, I promise. There is an entire community out there of other people your age who are fighting the same battles, who understand what you’re going through because they’re going through it, too. Please don’t wait to find them. 
  • Listen to your mom. She will almost always be right, even when you don’t want to admit it. 
  • You are stronger than you even know and you will grow stronger every day, even when it doesn’t feel like it. That unrelenting strength will be right there, right inside of you. 
  • Your past isn’t your present and your present isn’t your future. 
  • Your bad days don’t equal a bad life. Your bad days are not forever. 
  • You are going to cry and you are going to need to cry. Let yourself ride the waves and feel it all because keeping it hidden or bottled up will only make things worse. 
  • You are going to need rest and you are not weak because of it. 
  • You are going to have to give yourself grace through it all. It’s the only way. You are going to have to learn how to be kind, gentle, and patient with yourself. 
  • Remember to breathe. 
  • Find something every day to be thankful for, even when it’s hard. 
  • You are not any less deserving of love because you have a chronic illness. 
  • Do not settle for anything or anyone’s opinion.
  • You are not an inconvenience or a burden. 
  • You can’t compare your health or your journey to anyone’s else’s.  
  • You can’t put a timestamp on healing. Healing doesn’t happen on straight timeline and it doesn’t have a set end date. It’s complicated and hard and messy as heck. Putting in the work and putting yourself and your health first will always be worth it. 
  • You know your body better than anyone else. You are going to have to fight for it. 
  • You will often have to separate to elevate – from certain people, from negativity, from anything that holds you back and holds you down. 
  • Your thoughts hold great power; thoughts become things if you let them. Both positive and negative.
  • Your chronic illness is an important part of who you are and what shapes you, but it does not define you. 
  • Your story is worth sharing. Your voice deserves to be heard.
  • Your pain will become your power.

I guess what I’m trying to say is this: you’re going to go through a lot, but you’re going to learn from it and grow from it. You’re going to fight through it because that’s what warriors do. There will be days when you’ll feel so angry that you have this disease that all you can do is go to bed and hope tomorrow will be better. But there will also be days when that hope for a better tomorrow seems to finally exist in the present, when the anger starts to fade into the background and you feel like you can not only handle but conquer this life you’ve been given. This life is going to be good and bad and everything in between and you’re going to make it through.

I just wanted to tell you that. 

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