8 Things You Can Do to Live Well With a Chronic Illness
Yesterday morning I sat in the infusion center beside a beautiful woman named Christine. We always try to sit together in the infusion room when our dates coincide at the Auckland City Hospital in New Zealand. Every since we first met, we’ve been sitting together as we deal with our chronic illnesses. She has myasthenia gravis, and I have pandysautonomia. She’s great company.
I’m always impressed with Christine. In the face of some truly difficult challenges, she always looks beautiful and is beautiful. She’s carefully groomed, well-dressed and has such a warm and lovely nature. She remembers my kids’ names and cares about what they’re up to. She works part-time as an English tutor and is studying the Maori language in her spare time. She is a devoted mother, grandmother, wife, neighbor, online patient forum member and a friend to many. I honestly can’t comprehend how she manages all of those things every day while living with a severe chronic illness.
Her example makes me want to be better at living with a chronic illness. She’s made me think more about all the things that we can do to manage, cope and transcend chronic illnesses.
Here are the eight things that might help you live well while dealing with a chronic illness:
1. Get creative.
Knit, crochet, write, listen to music, paint, sew, create, play an instrument or do whatever you can do within your ability. Do you remember what it’s like to create something on your own? It’s transformative, distracting and wonderful. Listen to creative people talking about their projects, invite creative people over to teach you techniques, watch YouTube tutorials and take online courses. If you can, attend cultural events, musical recitals, the ballet, a musical, a movie festival and poetry readings. If you can’t go in person, visit them online.
2. Get involved.
Participate in the initiatives and events organized by patient groups on Facebook and elsewhere. Get to know others. Engage with them. Help fundraise for research. Get the word out in whatever ways are available to you. Post and comment in patient forums. Finding your tribe is so good for you.
3. Get ready.
I have spent days that eventually became weeks and years living in old jeans, t-shirts, sweat tops and PJs. If you can manage it, find a position that works for you near a mirror and put on some makeup. Brush your hair and find something nice to wear like a favorite scarf. Sometimes, getting ready for the day, even if it’s likely to be the same as yesterday, might make you feel a little brighter. I don’t understand the psychology of that, but it just somehow seems to work for me.
4. Get outdoors.
Look at the beauty of the sky, breathe in fresh air and feel the breeze on your cheek. Even rain feels incredible when you have been stuck inside for too long. I have never felt so amazing as when I floated in the warm sea on my back with the blue sky above and white sand below. It’s so therapeutic.
If you need to stay in bed, see if someone can bring you something beautiful from outside from time to time. My kids have always been so lovely with this — cicada shell, a posy of autumn flowers, a droopy dandelion seed head with all the wishes wished. When you have treasures from outside to hold, it can take your mind out there.
Take a look at Be Couper’s photos on my blog’s “How to Just Be” series. She has generously shared some of her stunning photography for my readers to lose themselves in when nature needs to come to you.
5. Transport yourself.
Reading, listening to audio books and watching television series or movies will take you places. Overcome your reality with a healthy dose of fiction. Audio books are particularly helpful because you don’t have to lift the book or strain your eyes. When I really want to get outside of myself, I call a close friend or family member overseas and indulge in a long chat. Imagining the things they tell me about, where they are, how it looks, how it feels. It’s armchair travel with the joy of connection.
Laughing can raise your endorphin levels, and happy hormones can’t help but leave you happy! Watch a comedy. Listen to children talk or play games among themselves. Be silly. Nothing makes the kids giggle so much as coming home to find Mommy in an odd wig. Wear silly things if that’s your thing. Listen to podcasts from clever comedy writers. Read funny blogs. Let your children choose your clothes for a day. And when you laugh, make it big. Breathe deeper, laugh louder, linger longer on the funny bit. It’s good for you.
A chronic illness can teach us so much. Often we’d rather skip the lesson, but we get it. And consequently, we “get” a lot about life. About how to truly love. About patience, compromise, honesty and communication. Be generous with that hard-fought wisdom. Be a good listener. Do you have a talent or skill that you can offer? Find ways to tell people how much you appreciate them. Being generous is one of the ways human beings become happy. If you can’t give of your energy, you can give of your heart.
8. Find your thing.
All of these strategies are things I’ve observed in people I admire with chronic illnesses. Some of them work for me, too. But for me, the greatest tool of all is writing. Writing is my therapy, my release, my way to help and my connection with my community. If you would like to try blogging, too, I recommend it. It can open doors to opportunities you might have never imagined before.
Whatever methods you employ, don’t give up. I believe there are always ways to overcome.
Follow this journey on The Chronic-ills of Rach.