8 Ways to Live With Chronic Illness

nanis.it“Life isn’t about waiting for the storm to pass…It’s about learning to dance in the rain,” wrote Vivian Greene.

“Courage doesn’t always roar. Sometimes courage is the quiet voice at the end of the day saying, “I will try again tomorrow,” wrote Mary Anne Radmacher.

These are two of my favorite quotes about living with a chronic illness, about the quiet conviction required from someone with a lasting condition to live gracefully, without getting bitter. I have, for the last six years, lived with treatment-resistant depression, fighting death thoughts (“I wish I were dead”) throughout my day. Although I haven’t stopped trying new drugs and alternative therapies, I am finally accepting the possibility that I may never get “well” or as well as I was in my twenties and early thirties.

So I’m shifting my energy from finding a cure to learning how to “live around” the illness, turning to people with debilitating conditions like fibromyalgia, lupus, and chronic fatigue syndrome—as well as to scientists, meditation teachers, and great thinkers–for instructions on how to manage painful symptoms. Here are a few gems I have picked up, tips on how to dance in the rain … and where to find the courage to try again tomorrow.

1. Let go of the blame.

Former law profession and dean Toni Bernhard contracted a mysterious viral infection on a trip to Paris in 2001. In her courageous and inspiring book, “How to Be Sick,” she writes:

I blamed myself for not recovering from the initial viral infection–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—the bias is often implicit or unconscious, but it is nonetheless palpable.

I was relieved to read this because I have tremendous shame for not being able to beat my condition with the right eating, thinking, meditating, or exercising. Not until Bernhard stopped blaming herself for the illness could she begin to learn how to treat herself with compassion and begin to free herself from unnecessary suffering.

2. Distinguish your illness from yourself.

I learned this concept in the mindfulness-based stress reduction (MBSR) course I took a few months ago at the local hospital: how to separate your pain from yourself. You can be aware of the symptoms, the aches, the hurt without inviting them to become part of you. So as I’m running or swimming and get a painful thought, such as, “You will always suffer; you would be better off dead,” I acknowledge the thought, I register where in my body it has landed (usually my neck or shoulders), and then I try to detach from it so that I don’t over-identify with its message. Bernhard would lie in bed and repeat, “There is sickness here, but I am not sick.” It was her effort to break down the notion of a solid, permanent self that leads to fixed identities such as “I am a sick person.”

3. Address envy.

According to Bernhard, “Envy is a poison, crowding out any chance of feeling peaceful and serene in the mind.” I so struggle with this myself. I’m envious of my husband, who doesn’t feel suicidal if he skips two days of working out. I’m jealous of friends who can chill out with beer and pizza on Friday night and not be worried about the severe ramifications those substances would cause on their moods the next day. The antidote is a Buddhist term, “mudita,” meaning sympathetic joy; joy in the joy of others. The idea is to be happy for my husband and friends: to try to enjoy their joy. “Look! They are enjoying delicious pepperoni pizza. Isn’t that sweet?” Bernhard says it’s ok to fake this in the beginning. Mudita will eventually enter our hearts and minds and bodies until it’s a genuine expression.

4. Honor your limitations.

Chronic illnesses are tough on people-pleasers because the pleasing types can no longer skate by in their low-maintenance way. It only took me a few years of suffering the consequences to figure out that it’s far more painful to not assert myself (and cause a setback that could last months) than it is to say, “I’m so sorry, but I can’t.” Honoring my limits means I choose to stay home from a family vacation. Those decisions are painful because I’m missing out on fun memories and photo opportunities that I could post on Facebook. But I know how easily my health can deteriorate and I need to protect it with everything I have.

5. Connect with universal suffering.

There is a famous Buddhist tale of a bereaved woman whose only son died around his first birthday. “Can you revive my dead boy?” she asked the Buddha. “Yes,” he replied, “but I will need a handful of mustard seed from a house where no child, husband, parent, or servant has died. She returned to the Buddha empty-handed, because death had visited every house. I don’t mean any disrespect to bereaved parents, as I know losing a child is the greatest pain. However, the story is a powerful reminder for me that my suffering is merely part of the universal suffering that all of us, as human beings, endure. If I can place my ouch in proper perspective, my heart opens in empathy for others.

6. Use your pain for good.

“I’m certainly not going to waste this pain,” Rick Warren, Pastor of Saddleback Church in Orange County, California said about the sudden suicide of his Matthew, 27, in April of 2013. “One of the things I believe is that God never wastes a hurt and that oftentimes your greatest ministry comes out of your deepest pain.” Whenever my death thoughts are so loud that I can’t hear anything else, I will start to pray the Prayer of St. Francis, “Lord, make me an instrument of your peace …,” and follow it by a Buddhist prayer that meditation teacher Tara Brach, Ph.D., mentions in her book, “Radical Acceptance”: “May my life be of benefit to all beings.” These two prayers channel my pain to a purpose or deeper meaning, and widen the circle of my compassion.7902654

7. Let go of expectations.

Anyone who has been sick for over a year knows the disappointments of new treatments that promised to be “it,” the cure that would end your nightmare, only to fail. Or of working with doctors that you really thought understood your condition, only to be disillusioned. Our suffering arises from our desire for certainty and predictability, says Bernhard. When we try and let go of our yearning for control, we can begin to know peace. She writes:

Imagine living in a world where we’ve let go completely and it’s okay if we can’t go to that family event, it’s okay is a medication doesn’t help, it’s okay is a doctor is disappointing. Just imagining it inspires me to let go a little. Then it’s easier to let go a lot. And every once in a while, I let go completely and, momentarily, bask in the glow of that blessed state of freedom and serenity that is equanimity.

8. Find your tribe.

One of the most popular quotes on Pinterest (author unknown) reads: “When you find people who not only tolerate your quirks but celebrate them with glad cries of “Me, too!” be sure to cherish them. Because those weirdoes are your tribe.” I didn’t have a tribe the last few years, and I desperately needed one because it was unfair to dump my stuff on my husband every day. So two months ago I started Group Beyond Blue, an online support group for people who live with depression and anxiety. It is officially my tribe. There is humor, wisdom, empathy, and friendship there that has helped me navigate through my moods more gracefully than when I was tribe-less. Even if I wake up every single morning of my life with painful death thoughts, I know I will be able to live a full life because of this group.

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14 thoughts on “8 Ways to Live With Chronic Illness

  1. These daily encounters with depression and anxiety are like a daily fencing match. En garde, engage, parry, lunge, feint. (so many applicable terms). Be prepared and use all your skills, options, knowledge and support of friends to battle against these beasts. Excelsior !!! (ever upward)

  2. Oh Theresa! I so needed this column today! Thank you so much for writing it. I have recently learned I have chronic PTSD amongst other chronic conditions. The PTSD diagnosis while giving me something that makes sense of what is happening to me and why, I have also been knocked to the ground by the reality that for me there will be not one time cure. Right now the last two days have been down days for me after feeling pretty good for a couple of weeks. Perhaps because of the dark cloudy weather we have been having and the shortening of the days have contributed to this. I am still astounded that I can feel so good and yet slide into the pit of despair for apparently no reason. I am lucky to have a good doctor and a wonderful therapist to help me along this new road. But your article today is so good with information about living with chronic disease and pain. Again, Thank You!

  3. It is so inspiring to see the strong examples of those with heavy burdens who continue to fight the negativity and look for the hope and light in the world! I know that things are so hard sometimes, but I know that we were meant to conquer. I love this short video clip that talks about our “mountains to climb”. https://www.lds.org/media-library/video/2013-01-003-mountains-to-climb?lang=eng Faith in Christ has always helped me through the hardest things in my life and given me a reason to hope! What was the turning point that helped you find hope?

  4. I loved your post Therese. I just shared it on Facebook and my other social media sites because I think it will help a lot of people — not just your suggestions from my book, but your other ones too! You are an inspiration.

    With great admiration,
    Toni

  5. Thank you for this wonderful post! I’ve lived with Crohn’s Disease for over 40 years and have gone through many incarnations on my journey to acceptance. I’ve learned how to take the best care of myself that I can, one decision at a time, and as a result I’m a lot better now. And yet – I still get sick sometimes, sometimes quite sick. I’ve learned not to blame myself anymore or to be envious (well, not too envious) of others who can eat whatever they choose, especially in restaurants – and of those who can travel easily. This is my journey and I use it for the best ‘good’ I can for both myself and others.

    Now I’m going to order Toni’s book – can’t wait to read it!

  6. I really needed to read this today. I have depression and my doctor and I are struggling to get it under control. I also have fibromyalgia and I have a really hard time with the blame part. I feel guilty all the time for being sick.

  7. Such wonderful tips for living with chronic illness. I think you left out the best part of the Buddha’s story about the woman looking for a home that was untouched by death: “Seeing she was not alone in her grief, the mother let go of her child’s lifeless body and was filled with great compassion.” In realizing that the suffering had not singled her out, she was able to have compassion for those others who shared the same pain. To me, the most important aspect of this story is that she came to the realization herself, no one was trying to tell her that her suffering was unimportant.

  8. Hi, my sister posted this in my facebook, and it really means a lot to me. I have EDS (Ehlers-danlos syndrome) It is a daily and sometimes hourly struggle to stay motivated, positive and happy. There was a lot in the article that really expressed, so eloquently the suffering i endure; like the shamefulness, envy of others and the people-pleasing aspect (that is so me). I feel like i try so hard to keep all the pieces together, but it is exhausting! I recently had two tattoos done on my wrists; ‘This too shall pass’, and ‘Just keep swimming”. They really help me to keep trying and know that the pain will not take over my life to keep on going and live my life. Thank you to all who shared their thoughts and feelings, it is so good to see that people are not only surviving but living their life regardless of the hand they were dealt.
    Today is a present, so unwrap it without the fear of having to return it tomorrow. Seize the day/hour/moment and enjoy!
    This Too Shall Pass :)

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