On Living Well with a Chronic Illness
Written on April 7, 2013 by Lene Andersen
I had a great time writing a guest post for CreakyJoints a couple of weeks ago and was thrilled when they asked if I wanted to become part of the team. After years of reading the great posts published on the site, of course I wanted to be part of the team! My little corner will be called Lene’s Seated View. Like the title suggests, my thoughts on living well with a chronic illness will occasionally be of a slightly philosophical bent.
So, what am I on about with this talk of living well with a chronic illness? I come at this issue from the perspective of someone who’s lived with rheumatoid arthritis (RA) since I was four years old, giving me over 40 years of experience with the disease. Medications for RA that actually work are relatively recent and for most of my life, treatment consisted of painkillers. It was a big moment the day they handed me Orudis, an NSAID, which helped control the pain better than anything I’d tried before.
My parents are smart. They saw that I was going to have a pretty rough go of it and needed tools to cope and made it their mission to teach me how. One of the best things they ever told me was that I had a choice in life: I could cry or I could laugh. Simplified for a child, this was a lesson that although I may not be able to control what happened, I could control how I reacted to it. And I knew that I would rather spend my life laughing than crying.
Luckily, life with a chronic illness means that there are a lot of laughable moments. Whether it’s pompous doctors, those sexy hospital gowns, having to ask your children to open the pill bottle with the childproof cap or discovering just how loud you can belch from side effects to the meds, opportunities to laugh litter your days. Sure, some things are funnier afterwards and others require a rather dark sense of humor. Equally luckily, your chronic illness will likely help you develop that dark sense of humor!
Still, there are times where finding something to laugh about is hard. Sometimes, life with a chronic illness puts so many challenges in your way that you start every day crying in the shower. That kind of pain makes you feel alone and hopeless. How do you find your way back to coping — and laughing — when you’re lost in the woods?
That’s where the second big lesson I received enters the picture. This one comes courtesy of a fortune teller at a psychic fair many years ago and yes, that was as funny as it sounds. I don’t remember the details of the tarot card reading, but I do remember the psychic telling me about one card in particular. The card is called the Five of Cups and shows a man looking at three cups on the ground below him and weeping. The cups are knocked over, the contents spilled and seeping into the soil. Behind him are two filled cups. The woman doing my reading told me that this card was a reminder to look at what I had, not at what I didn’t have.
Look at what you have, not at what you don’t have. When you think about it, that’s a pretty profound statement. More than that, it’s a philosophy that can help you find your way out of the dark place. It shifts your perspective to the positive and helps to emphasize what you can do, instead of what you can’t. When you’re stuck in awful, looking at what you have can be your support to start taking one small step after the other into the light. It can be as simple as sharing one good thing from your day with your family over dinner, helping everyone change their focus. It can be keeping a gratitude journal, keeping your thoughts private, only for yourself. Or it can be stopping on the sidewalk to take a breath and look at the sunlight filtering through green leaves. Best of all, this approach to your day has ripples. Being aware that you’re on the lookout for good things to share with the people you love has a way of bringing more good moments your way. Every one of those moments is a step in the right direction.
Today, many more treatments exist to help than when I was growing up and so many more of us are doing so much better. But the reality is that living with a chronic illness is still a complicated business. A chronic illness is with you for the rest of your life. It ebbs and flows and when it does, you go in and out of good times and not-so-good times. Your ability to cope will carry you through it all. In my life, there have been many valuable lessons that have contributed to my ability to cope. Two of the most important ones were from my parents and the psychic. Shifting your perspective to find joy and laughter will get you far along the way to live well with a chronic illness.
Lene Andersen is the author of Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain. She is also the Community Leader at HealthCentral.com’s RA site, Director of Community Outreach for Show Us Your Hands! and writes the award-winning blog The Seated View. In her spare time, she is on the hunt for more spare time.