15 tips for living with chronic illness

First published on KSL.COM
Question:
You mentioned in one of your recent articles that you suffer some chronic pain. I wondered if you would give us some advice on dealing with chronic illness and staying positive. It is terribly discouraging and depressing to feel sick all the time. How can I find joy when life is one health problem after another?
Answer:

CC Scott said, “The human spirit is stronger than anything that can happen to it.” I believe this is true, so the first thing I want you to know is that you can have joy in spite of this, and you can beat discouragement most of the time.

I say “most of the time" because every once in a while it is perfectly normal to have a big old pity party about your pain or illness. I do. I have been diagnosed with Sjogrens syndrome and it's not fun. Chronic illness is tough and it gets discouraging. An occasional fall apart day (or hour) or week is totally acceptable - but you can’t live there.

After you give yourself the chance to mourn, which you will do, because "loss of health" is a loss, you must choose a positive, determined, healthy mindset so you can thrive in spite of the challenge. Vivian Green said, “Life isn’t about waiting for the storm to pass...it’s about learning to dance in the rain.” For many of us, the storm isn’t going anywhere, so we need to start dancing.

I asked some other people I know who are battling chronic illness to help me with this article partly because I wanted some more advice on this, too. Hopefully, their ideas will help you as much as they've helped me. Here are our suggestions for making it through chronic illness with as much joy as possible:

1. You must make self-care your top priority. If you don’t, you will have nothing to give anyone else. Whether it’s sleep, exercise, eating right, doing less, getting massages or taking naps - do what you need every day.
2. Set very realistic goals, but have some kind of project or goal you are working towards. Accomplishing even small things will increase your satisfaction and joy.
3. Understand that illness is not a sign of weakness or a personal failing. Do not blame yourself for being sick. Toni Bernhard, author of the book How To Be Sick, writes ”I blamed myself – as if not regaining my health was my fault, a failure of will, somehow, or a deficit of character. This is a common reaction for people to have toward their illnesses. It’s not surprising, given that our culture tends to treat chronic illness as some kind of personal failure on the part of the afflicted.” You cannot buy into this. You must know the truth and see this experience accurately. (Read No. 4 for how.)
4. Understand this illness is just a class in your life to teach you something. Life is a classroom and if "health problems" is your current class, there is a reason you are here. There is something that this experience can teach you that you apparently need to learn. If you see your illness as a class and focus on the character development it could bring you, it will change the way you experience it. Khalil Gibran said, “Out of great suffering has emerged the strongest of souls; the most massive characters are seared with scars.” This is truth. Suffering builds character and compassion and in the end it makes you stronger and better. If you focus everyday on how your current experience could improve your character or allow you to help other people, you will suffer less - I promise. Viktor Frankl said, “In some way, suffering ceases to be suffering at the moment it finds a meaning." This is profoundly true. Try it.
5. Don’t let the fact that others don’t have "chronic illnesses" get to you. "Miraculously recover or die is the extent of our cultural bandwidth for chronic illness," according to S. Kelley Harrell, and I agree. People just don’t know what to do when they can’t say “get better soon.” When there is no getting better, they don’t know what to say. Don’t be offended by this. Just let them be where they are and know they really do care. (If you want to know the right thing to say to someone suffering with chronic illness try, “I love you, sorry you have to go through this, you’re in my prayers," or, "You are so strong and it’s really inspiring!”)
6. Find a support system with other people who are in the same boat. It really helps to have people in your life who do get it and can offer encouragement and suggestions.
7. Don’t own the chronic illness and make it your identity. Avoid saying things like “it’s my lupus.” Just say, “It’s lupus.” There is a difference and it does matter. You are much more than just this challenge and it does not define you. You are much more than this experience.
8. Keep moving as much as you can. My friend Alex has Parkinson’s disease (you can follow his amazing blog here) and he recommends walking, biking, tai chi or whatever you can do to keep moving, because exercise produces endorphins, which feel great. They also improve mood and help your immune system. I would add getting out in nature as much as you can, too. It does me a world of good.
9. Enjoy the moment. Alex also says illness may change your operating parameters, but it doesn’t change your ability to enjoy the small things. When you mourn your lost abilities you miss out on the joy in this present moment. Be present now. Don’t spend this moment thinking about the painful hours, days, months and years to come, either. Focus on getting through this moment with joy. One moment at a time.
10. Redirect yourself and don’t dwell on your illness. The most helpful piece of advice came from one of my coaches, Kari Patane, who suffers from lupus. She said when you have an emergency condition it takes all your attention to deal with it, but with chronic illness you will do better giving it less attention. She has a notebook she writes in when she needs to complain. Her notebook is the only one that needs to know how bad she feels. When she is done venting, she closes the book and lets it go. Then she focuses on everything else. Later she may go back and read her old entries and try to figure out what lessons she is learning from the painful moments. She writes the lessons in red ink right over the complaints. Looking at the lessons she has realized she is grateful for her perfect journey and all it is teaching her. It is making her into the person she wants to be.
11. Find a great doctor that you like, who is readily available to you. If you aren’t happy with the doctor you’re seeing, switch and find one that works better for you. (I had numerous people recommend this.) They also said to be honest with your doctor about everything you are experiencing so they can really help.
12. Know your limits. Read the Spoon Theory, here is the link. It’s a great way to explain chronic illness to friends and family and it will help them understand when you can’t attend something because you are out of spoons.
13. Be happy for healthy people. Therese Borchard wrote a great article called 8 Ways to Live with Chronic Illness in it she explains about a Buddhist term called Mudita, which means sympathetic joy (or joy in the joy of others). The idea is to be happy for others and their blessings instead of angry or jealous that you don’t have them. She says Mudita takes a little time to acquire and it’s okay to fake it till you make it. She promises that Mudita will enter your heart and you will feel it for real the more you work at it. (This is one I’m going to practice.)
14. Remember there are always people, who have it worse than you. Your attitude changes based on to whom you are comparing your life. Every time you find yourself feeling bad because others have it better, think of someone who has it worse. Take a minute and count your blessings. Gratitude can turn your attitude around quickly.
15. Serve others as much as you can. Even if you can’t do much to serve other people, you can still send love in their direction. In Bernhard’s book she teaches another buddhist technique called Tonglen, a practice to send compassion towards others. All you do is sit quietly and breathe in all the suffering of others (even all the suffering in the world) and then breathe out kindness, serenity and compassion to send to the world. She says Tonglen is a powerful counter-intuitive practice because it reverses the ego’s logic. Your ego wants to focus on breathing in goodness and out negativity.Tonglen is about focusing on giving to the world and even healing the world instead. In her book Radical Acceptance,Tara Brach, PhD., encourages a Tonglen prayer that says, “May my life be of benefit to all beings.” This idea channels your pain and the wisdom it gives you to serve and bless others. This idea is part of the reason I write this column each week. It’s my way of using what I’ve learned to hopefully benefit someone else. How can you use what you’ve experienced?

One of my favorite quotes by Marcus Aurelius says, “You have power over your mind – not outside events. Realize this, and you will find strength.”

Often in life we have no control over our situation, but we always have control over how we will experience the situation. To help me control how I experience illness I read something three times a day to keep me centered in the mindset I’ve chosen. You can download my reading here. Feel free to tweak it to make it work for you. Then read it three times a day until you internalize it.

You can handle this and thrive! 

Kimberly Giles is the founder and president of claritypointcoaching.com. She is also the author of the new book "Choosing Clarity: The Path to Fearlessness" and a popular life coach and speaker.