Dear 16 year old me,
In 3 days you will be diagnosed with something that will change your world, little girl. You’re going to mature much faster than you expected. Life wanted more out of you at a younger age & this will change you.
I know you just got out of a lengthy, scary, life-threatening ICU stay. I know you had to say goodbye far too early in life to loved ones who won’t ever feel the same about the things that went unsaid during and after that hospital stay.
You’ll need surgeries to improve your quality of life. The recovery may be a bit sensitive in nature and reading how those procedures are done is mortifying. You’ll quickly learn next to nothing is embarrassing to talk about with professionals.
You will lose friends.
You’ll realize you only needed those friends up until a certain point in your life and other new friends will step into your life when you find that you need it most. Don’t be afraid to open up to these friends. They accept you for who you are and they can relate to you on a whole different level because of the types of illness they have.
You’ll find people who love you and some will mistreat you. You will find “love for now” and realize quickly the most important person who loves you.. is you. When things get rough, try to let people in. (You’ll never want visitors at the hospital. This is something you don’t grow out of. And it’s OK to set those boundaries).
When you find love and lose it, you’ll realize you’re so much more and that being sick isn’t WHO you are, but a big part of your life. If someone is willing to walk away during the toughest of times, they don’t deserve your love during your best times. You’ll be stuck in this moment for quite some time, left feeling worthless, broken and unlovable. Don’t. You are worth so much more than you realize. You are more than blood counts and in-patient stays and endless infections. You are worth more than the needles that will be injected into your skin, the MRI machines that make noises louder than you’ve ever heard and definitely worth more than that co-pay that breaks your bank. You’re worth more than $0 in your bank account.
You will feel guilt when you’re unable to do something, but keep speaking up. There will be opportunities that come out of this situation that will make this disease so much easier to live with.
You will feel guilt that’s indescribable when you fail a medication that costs more than a house. Know that every person living with IBD is different and no two stories are the same. Still, hold out hope that one of these medications will place you in Remission. Don’t lose hope.
You’ll lose what you thought may be your career, and turn your life around to find what you wanted all your life is in front of you. Seize the moments you are given opportunities, no matter how conflicted you may feel about sharing parts of your story and yourself. You will learn that giving of yourself is a full-time job and the others are just hours in the day. You’ll dedicate your real career being your most raw, authentic self and you will help people in ways you never thought you could.
Find resources and use them to the best of your ability. You’ll realize quickly when you’re first diagnosed, there is next to nothing to read about your diagnosis. You will be a part of the patient community that will help change this and help eradicate the stigma of talking about bowel disease.
You’ll run your first half-marathon 6 weeks after you have surgery. it won’t be your last, but your journey to do a triathlon will be hindered by many things. Scary things.
You will be challenged with new, scary and serious diagnoses, but it is nothing you will not be able to handle. You will go through more than 15 GI’s before you find 1 very good egg who will be in your corner when things don’t go as planned. You care team will be big, but your hopes in finding Remission are much bigger.
Don’t give up.
Things DO get better. You will love and lose. You will face challenges you don’t deserve. You will fail many medications and spend a lot of your time in waiting rooms. But your voice will be heard. You will be an intricate part of patient-centered care and give vital feedback to your care teams that they take seriously. You will be a part of the change in patient advocacy and realize your potential from a young age and will quickly realize that is something you will never want to give up.
Hold on to hope; the best is yet to come.