Like many children who grow up with chronic diseases, I grew up far too early. I inherently understood life on a level my peers did not – but that doesn’t mean I understood the art of adulting. That is, the act of becoming an adult.
Transitioning into adulthood is a tough time for anyone, but throw in the isolation of chronic disease, managing doctor’s appointment, medication regimes, choices about diet and exercise, dealing with the bureaucracy of health care and medical bills. It’s a lot. And so very exhaustingSo how do we go about adulting with chronic diseases like rheumatoid arthritis?
First: relax. You’re going to make mistakes – or what you perceive as mistakes. Every experience will guide you and teach you valuable lessons that will make your future years easier. Those mistakes that had my stomach in knots, the ones I was convinced would in fact label me a failure for the rest of my life, have in fact turned out to be JUST FINE. I can’t even remember what they were…
Be good to yourself
Treat yourself how you would treat others. You like that twist on the classic old saying? I do, and they’re words I now live by. Growing up with chronic disease can make you more empathetic to just about everything around you. But don’t forget to give yourself some of that loving energy as well. You must take care of yourself first!
Learn to be selfish. We so often think of selfishness as a bad thing like that time our sibling hogged all the good toys. Learning to be selfish means prioritizing yourself and your needs. It means learning to say no and being able to voice what it is you need to better maintain your health. If you need a nap, take a nap! If you aren’t up to going out on a Friday night, maybe ask if your friends are willing to come to you! They want to see you just as much as you want to see them. The more you communicate your needs in a casual and helpful way, the less isolated you will become.
Listen to your body. Getting in tune with the subtle messages your body gives you can help you improve your health. Can you identify foods that are triggers for your pain and inflammation? Does movement help you, or does it hurt you at times? By learning to read these cues in our bodies we can make proactive plans for ourselves. Learning to eat right and cook for ourselves can be a joy because we know we are doing everything we can to help ourselves.
Exercise shouldn’t feel like something we have to do! Sign up for a class at your school that is fun and keeps you moving. Go out of your comfort zone and sign up for a club (many are free!). Maybe you always wanted to learn to be a better swimmer, or want to explore safe biking trails in your town. You’ll have the added benefit of making new friends too!
Become an active member of your health care team
Ultimately, when you are 18, health care decisions will be yours and you need to understand how to make them. Use your teenage years to learn from the adults in your life. Discuss decisions with your parents, and listen to the advice. Gradually shift into you making the decisions.
You are the driver in your health care, so don’t be afraid to grip the wheel! This is the time when your doctor’s appointments should start being driven by you, after all – the appointment is for you. What questions do you have? What do you want to know about managing your disease? Don’t be afraid to speak up, and if you don’t want your parents in the room for the whole appointment, ask for that respectful space. If they seem shocked or overly protective, remind them that you are trying to learn and grow into a responsible adult! That being said, I STILL call my mom and dad and ask for advice on new medication regiments and which doctors to seek out.
There are so many things I wish I could tell my younger self. Advice on life, love, self-care, managing my chronic pain from spondylitis and rheumatoid arthritis, amongst many other kernels of wisdom. I’m hard on myself, thinking I could have done better, I could have done more. But the truth is, the choices I made were the right choices – because they uniquely made me who I am today.
Try to care for yourself every day. “Try” is the keyword here. It doesn’t always mean we’ll succeed, and that is ok. As long as we wake up each day and try to be responsible about managing our health– then we are winning. Repeat after me, if you are trying, you are succeeding.
Lastly, don’t beat yourself up. You can plan for everything in the world, set all the fantastic goals, but eventually you’re going to end up in the drive-thru burger line at 1 a.m. making great memories with friends! This is called living. While your chronic disease requires management, it does not remove the carefree from your life. Give yourself permission to be you, to enjoy your life, to enjoy your time with family and friends. Then maybe tomorrow, go back to the art of adulting.