7 Ways to Maintain Purpose When You Have a Chronic Illness
I know the message we’re all used to: “Yes you can!” We’re told that if you try hard enough, have enough willpower and continue to push through, you can do anything you want. I would love it if that were the truth, but when you have a chronic illness, unfortunately there are times when your body simply won’t let you keep going. Sometimes you have to rest, and that rest can be a period of weeks, months or years. So what can you do? How can you spend each day in your room and maintain a sense of purpose and dignity? More importantly, how can ensure that your life continues to be engaging and meaningful to you?
Here’s what I’ve learned:
1. Keep your mind alive.
Sometimes I have awful brain fog, so even this isn’t always possible. But I try as much as I can to keep myself engaged in the world around me. What are you interested in? Try and find out as much as you can about it. On a bad day for me, that can mean watching the news and letting the words pass over me. On a good day, that can mean reading a book I’m excited about, finding some journal articles from Google Scholar and checking out the latest research (I have a love of anthropology) or revisiting old science textbooks and reminding myself what the periodic table was all about.
You’re intelligent, you have value and if you prod your brain in even the smallest ways it will keep ticking over.
2. Set small goals.
On most days I can only do one thing. That might be making a meal, it might be making my bed. But doing that one thing can help me to maintain a sense of purpose.
I often can’t do it all in one go. For a meal, in the morning I might peel the vegetables, then after a rest I’ll be OK to brown the chicken. Finally I might have the energy to get a stew in the oven. I don’t mind if it takes me all day to make that meal. Once it’s the evening and I’m eating something delicious I’ll be proud. That’s enough for me.
3. Stay creative.
I’ll admit I’ve lost some of my creative flare; it’s hard to think about artistic projects when I’m in pain and tired. But there are still some things I can do.
Completing something small, like an adult dot-to-dot takes up time and can be a form of meditation. It slows things down and allows me to concentrate on something physical in a way that watching TV simply doesn’t allow.
Lino cutting, doodling or simply looking through art books can be enough to remind me that I am more than a struggling body. Keri Smith’s books have small projects that can take minutes or hours, depending on how you feel. Sometimes my brain isn’t awake enough to have an idea but once I have a prod then I can run with it. Creating something, even something formulaic, helps you see what you’re capable of and, once you have a few things you’ve made, it gives you a bank of things to show you that you’re so much more than you imagined.
Remember: “Creativity takes courage.” –Henri Matisse
4. Write as much as possible.
It may not feel like what you’re going through is significant; however, each day you push through and continue until the next will change you. Each day that is desperate and each day you find joy will mean that you have distinct experiences that can help others. You might not want it or have asked for it, but you’re developing a voice. Write down your voice. You can journal, write short stories, poems – write anything. Don’t do it for anyone else, do it for yourself. By writing, you show that you value yourself, that what you say is important and that you are worth investing in – and that’s valuable.
“Writing… is an act of faith: I believe it’s also an act of hope, the hope that things can get better than they are.” – Margaret Atwood
5. Leave the house.
My current goal is to walk 5,000 steps a day. Most days I don’t manage it, but on the days I do I feel invincible. I know I used to row, I know I used to run, but right now I’m walking and that’s something. On the days I can’t walk far I make sure I leave the house. It helps change my environment, it gives me some fresh air and allows me to see things I might have missed. Whatever your reason, try and get out a bit. It helps.
6. Connect with others.
If you can’t get out easily, tell people. I’ve learned that friends and family don’t always understand how hard it is to go out and meet them, but if I tell them and explain why it’s difficult, they do make the effort to come and see me.
Some weeks are fuller than others, but phone calls, Facebook messaging or writing letters are the things that keep me going. Your friends can remind you of your value, even when you can’t see it.
7. Be kind to yourself.
This might be the hardest one, but be kind to yourself. You’re doing the best you can in difficult circumstances. Did you manage to get out of bed today? Great! You’ve been brilliant. Did you stay in bed and watch Netflix all day? Maybe that’s just what you needed. Learn to read what your body needs you to do and then celebrate when you give your body what it wants. Having a chronic illness can be a full-time job; your job is to be your best nurse, look after yourself, care for yourself and encourage yourself all the way. I promise, you’re doing far better than you believe.
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Thinkstock photo via sunemotion.