7 Things I Want Teens Diagnosed With a Chronic Illness to Know
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. 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 through my journey so far.
1. As time continues, the shock of the diagnosis will fade, but the pain might remain.
This is all part of the process, and accepting this was my new “normal” was hard at first but then made everything somewhat easier. The sooner reality sets in, the easier it gets.
2. I know you probably don’t understand any of this right now and your head is spinning; that’s OK.
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 don’t 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. You are not your tough experiences; you are so much more than that.
3. 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 OK. 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, you’ll want to push yourself, but learn to be patient and understand your limits. You are allowed to have bad days and cancel plans. You can’t help it if your health makes it too hard, and you shouldn’t apologize for that. If all you can do today is walk to the bathroom and back to bed, then throw yourself a party in bed because at least you got out of bed, you little warrior, you! Remember this: you’re still just as strong on the bad days as you are on the good.
4. There are going to be many byproducts of your chronic illness that feel overwhelming.
I’m talking about rude doctors, hours of scans, life-threatening treatment, chronic pain and don’t even get me started on the depression and anxiety that can come with it. You can get through all of this.
5. 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 a few rude comments that make you angry and cry. It’s OK to be hurt, but remember they don’t understand. I don’t even understand it sometimes!
6. Others might often say you’re an “inspiration” and “strong for such a young age.” This seems sweet, but it also might make you feel like you always have to be strong.
Take it from someone who’s been there: trying to fake a smile all the time to make other people feel more comfortable will only make you feel worse. It’s OK to show weakness or cry. It’s OK to not be an “inspiration.” You’re not obligated to be anything but yourself. It’s OK not to be OK. 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 yourself or those around you), then get back up.
7. You are never as alone as you think you are.
Believe it or not, there are many other teens going through the same things you are. Remember this: you’re never as broken as you think you are and you’re always stronger than you think. I know how scary the future seems, but try not to be afraid; you can learn to enjoy the ride.
Love,
Meredith Arnold has antiphospholipid syndrome and many other associated diagnoses. She advocates for teenage chronic illness one blog post and poem at a time. Follow her blog at smilingamidstorms.blogspot.com and instagram @smiling_amidst_storms as she advocates for a cure and tries to change the way people see teenage chronic illness.
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