A letter to my younger self offers wisdom gleaned from experience
Have you or a loved one recently been diagnosed? This insight may help
As we approach the end of Cystic Fibrosis Awareness Month, I want to share some wisdom I wish my younger self would’ve known at the start of my journey with this rare disease. Perhaps you’re in a similar situation and can relate to this advice.
Dear younger me:
I want you to know that you have inherent value as a human being. You are deeply loved by God and those who see you as you are. You don’t have to strive to be the same as everyone else. Focus on being yourself and you’ll find your people. I promise.
There’s no such thing as “normal.” That’s a lie that society sells you. If you look closely, you’ll recognize the idiosyncrasies in each person you encounter. Every human being is unique.
Perfection doesn’t exist. I know you’ve been striving your entire life for things like perfect health, perfect grades, and perfect behavior, but that isn’t attainable because no one has the capacity for it. So relax, you’re doing the best you can, and that’s all that matters.
Be who you are
Stop being ashamed of having cystic fibrosis (CF). You’re not broken. You’re not an “other.” Stop hiding this part of you, because one day, it will connect you with your dearest friends.
Don’t dwell on statistics or let them rob you of joy.
It’s natural that you’re afraid of dying. The possibility of death has been in your face since you emerged from the womb. But don’t allow this fear to stop you from living. Nobody is promised tomorrow, even healthy people. You may have a few more odds stacked against you, but it doesn’t need to temper your ability to dream big for the future.
It probably seems like there’s a dark cloud over you that won’t dissipate. That’s called anxiety and depression, and they’re a result of the medical trauma you’ve endured. It’s common to experience this while living with chronic illness. I’m sorry that medical professionals haven’t sufficiently addressed your mental health yet, but it will be something you’ll work on as you get older.
You don’t have to pretend that everything is sunshine and butterflies. It’s OK to admit you’re sad, because it’s a valid emotion. Life with CF is hard.
It’s also OK to say no to people without explaining yourself. If you’re not feeling well, it’s fine to cancel plans. That doesn’t mean you’re unreliable. It’s not your fault, nor is it a reason to feel ashamed.
Disregard other people’s expectations of you. No one knows what it’s like to live in your body and have to power through feeling terrible every day. You don’t have to answer to others.
Stop feeling guilty about things that are out of your control. You’re not a failure because you can’t work like able-bodied people do. Requiring more help than others doesn’t make you less of a human being.
You are not alone. Believe it or not, there are others just like you out there in the world.
Don’t let mean or uncaring people turn you inward. For every one of them, there are 10 others who are kind. There are people in the world who want to help you, walk beside you, and love you unconditionally. Trust those who show up for you under any circumstance, because they’re worth more than gold.
Your identity doesn’t depend on your ability to perform tasks, keep up with everyone else, or do things for others. Even in your sickest moments, when you can’t even move an inch, your identity won’t change. So focus on what’s true about you.
Above everything, I want you to live your life without inhibitions. You’ll beat the odds. Your tenacious spirit will carry you through, even when your lungs give out and you need new ones via a complicated transplant process. Believe in the future, because it’s bright!
And remember: You deserve to be loved as you are, so don’t settle for less.
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.
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