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13 Reminders for Teenagers Entering the Chronic Illness World

When I was 16 years old, I woke up one morning to find myself in a very unsettling state. I was disoriented and although I knew something wasn’t right, I couldn’t help but fall in and out of consciousness. And when I was conscious I would laugh at myself because I thought I had forgotten how to walk. Panic never set in, not until I heard my voice, that is. When I opened my mouth to call for help getting up, I didn’t hear my voice, I heard someone else’s, someone who was old and frail. A weak and distant “Mom” sound came out of my mouth, but it wasn’t my voice. That’s when the panic set in. From the moment I heard a nurse in the emergency room tell me that I had a stroke, to the day I was diagnosed with a rare inflammatory disease called Takayasu’s arteritis, and every day since then, I’ve learned many things.

Life isn’t something that should be taken for granted. Although it sometimes feels like the end of the world, it isn’t. Even though what you are going through sucks, there are worse days ahead of you. But rest assured, there are also amazing days. Days you’ve never even dreamed of.

I can’t go back in time and tell myself all of these things, but what I can do is post my advice on the big ol’ internet and hope that this brings clarity and comfort to someone who may need it.

No one can even begin to understand what you are going through, but just remember you are never alone.

1. It’s going to shock you. It’s going to shock everyone. You’re going to want to scream and cry and let it all out. And that’s OK. Before you can begin to heal, it is important to get all your anger and emotions out.

2. Every day is going to be a challenge. There’s nothing you can do but face it head on. You are going to get frustrated with so many things, but power through it. You will prevail.

3. You are going to appreciate so many ordinary things you never thought you’d miss. For me, I was dying to get back to school to take my finals. I realized how lucky I had been to be able to go to school and even though I hate tests, I wanted nothing more than to sit in a hot, sweaty gym in the middle of June with all my classmates and sit through hours of testing. I wanted to be “normal.”

4. You may feel like a freak, but trust me, you aren’t. You are just an ordinary human dealing with very unordinary things. You have a disease, but you are not your disease.

5. People will tell you how brave you are. Know that they are not lying. What you are going through is something that no one should ever have to face. Old, young, female, male, good or bad, no one should have to know what it’s like to emotionally and physically feel like you’ve lost control. And you are handling it to the best of your ability. For you, bravery is not an option, it’s what you have to do, but that doesn’t make your bravery any less admirable.

6. You may experience memory loss from time to time. You will survive. Things will get better with time.

7. Depression and anxiety are easily triggered by traumatic experiences. Never be afraid to talk to someone or seek help. Your recovery is important and the best way to get better is to feel better. No one can make you go, it has to be when the timing is right for you, but from my experience it might just be better than medicine.

8. Rehab. Rehab. Rehab. You might want to quit, but don’t. By quitting, the only person you are hurting is yourself. Do your future self a favor and put in the hard work now. The more time that passes, the harder it’s going to be on you in the long run.

9. Keep your sense of humor. You’re going to need it.

10. You’re going to see a lot of doctors and they are going to ask you a lot of personal questions. Be ready to answer them honestly and without shame. Never be embarrassed to tell your doctor if you’re sad or how many times a day you peed (trust me, this will come up). I promise you they have heard and seen worse things than whatever it is you have to tell or show them. It’s their job. Listen to your doctors and talk to your doctors. They only want the best for you.

11. You’re going to get sick of all the appointments, all the tests and definitely all the medications, but someday it may all be worth it. A certain satisfaction and pride in yourself comes along when you finally hear good news, or when you can finally stop taking that medication you were prescribed and have always hated.

12. You are going to know far too much about the medical world, much more than you ever cared to know. You will learn the names of different medications and what they are used for, you will be an expert at dealing with pain, you will know the right questions to ask and what an MRI looks and sounds like from the inside. Take pride in that knowledge, although you are struggling, you are learning so much.

13. You are going to be OK. Whatever life throws your way you will deal with it. And you will be a better person for it.