To the teenager just diagnosed with chronic illness,
Helpless, hopeless, lost. These are words that could likely describe how you feel right now. I understand completely and I wish I could reach through my computer screen and give you the biggest hug right now. Being a teenager with their whole life ahead of them come to an abrupt stop from the damaging affects of chronic illness is scary and not easy by any means. While I'm still trying to figure a lot of this out myself, I came up with a few things I've come to realize throughout my journey so far.
As time continues the shock of the diagnosis will fade, but the suffering will remain. This is all part of the process, and coming to realize this was my new 'normal' was hard at first, but then made everything somewhat easier. The sooner the dust settles and the smoke clears and reality sets in - in a strange way - the easier it gets. While I believe that God does work miracles and there is always hope, being able to let go of the fact that there wasn't a cure in a way made it somewhat easier.
I know you probably don't understand any of this right now and your head is probably spinning, that's okay. Soon, you will become a doctor and pharmacist without a diploma and know about your disease better than your doctors. Understanding what you have is good, but remember not to google it too much, otherwise you will likely convince yourself that you're going to die in 10 minutes. Knowledge is good, but remember to not let your diagnosis dictate you life. You are so much more than screwed up antibodies or a non functioning organ. You are a human being. A living, breathing person who was just given a bad hand in life. You are not your struggles, you are so much more than that.
Remember that you are not obligated to do everything a healthy person does. Sometimes you will have to sit out or take a nap in the middle of the day. This is okay. I know it's hard to watch everyone have fun while you have to wait on the sidelines, but your time will come. Being a teenager, I know you want to push yourself, but learn to be patient and understand your limits so you don't hurt yourself. Also understand that you are allowed to have bad days and cancel plans. You can't help that your health has made you unable, and you shouldn't have to apologize for that. If all you can do today is walk to the bathroom and back to bed, then you've accomplished so much for someone in your state and you should be freaking proud of yourself! Throw yourself a party in bed because at least you got out of bed you little warrior you!! Remember you're still just as strong on the bad days as you are on the good.
There are going to be so many by products of your chronic illness that are going to feel so overwhelming - rude doctors, hours of scans, life threatening treatment, chronic pain, and don't even get me started on the *cue sarcasm* absolutely lovely depression and anxiety that comes along with it. These are just roadblocks in your way that seem like mountains, but with God and the right support system you can cross any bridge and climb any mountain.
Not many people will understand what you're going through right now. In their world, teenagers can't get life threatening diseases and chronic pain so you'll probably get quite a few rude comments that will make you angry and cry. It's okay to be hurt, but remember that they don't understand, heck I don't understand it sometimes myself! Then comes the many times being called an 'inspiration' and 'strong for such a young age'. As sweet and amazing as this may seem, it will probably get to the point where it feels like you always have to be strong. Take it from someone who's been there and done that: trying to fake a smile all the time to make other people feel more comfortable will only make you feel worse and very anti-social. It's okay to show weakness every once and a while. It's okay to not be an 'inspiration', you're not obligated to be anything but yourself. It's okay to be human and cry. It's okay not to be okay. As long as you don't stay in a dark place for too long, then by all means cry and get angry (as long as you don't hurt those around you) then get back up and keep fighting. Always remember to never stop fighting. Sometimes it will feel as though your shoulders are being constantly weighed down by your struggles, but fight for a better tomorrow and remember that things can get better.
You are never as alone as you think you are and believe it or not there are hundreds of people going through the same things you are. And as much as you may hate your scars right now, they are proof of how incredibly strong you are. God gave you this life because you are strong enough to live it, and I know you probably want to give up right now, but you are stronger than anything chronic illness throws at you. Your illness isn't your fault and you're so much stronger than it.
This new 'normal' you've been handed seems so scary and overwhelming, but through it all you will be able to find yourself a little bit at a time. Sure you'll lose a few things along the way, but sometimes some losses can be the true gain. And if I could tell you one thing it would be that you're never as broken as you think you are and you're always stronger than you think. Oh, I know how scary the future seems, but please don't be afraid, you will learn to enjoy the ride.