The most frustrating thing for me about being diagnosed with chronic fatigue syndrome (ME/CFS) was not the debilitating fatigue, the sleepless nights, or the brain fog. The most frustrating thing was that there was nothing I could do to help myself. I went on with life as best as I could, with this endless burden on my shoulders. I did not know if I’d ever be able to hold a full-time job, graduate university, or live out my dream of traveling the world. My ME/CFS symptoms were intense, and it was too much to think about when I could barely do my own laundry.
After a really bad crash about five years ago, I was lucky enough to get a referral to a holistic health clinic. It was there that I got my first taste of how yoga could help me manage my health (which has now become my passion and my job!). I also took the mindfulness-based stress reduction course. After three months at the clinic, my life had changed. I wasn’t “cured” from my chronic illness. I didn’t feel 100% better. I only felt a little bit better. I had felt that well before just from the natural ups and downs of living with ME/CFS. What had changed, however, was that I had a different way of looking at illness. And most important, I had tools at my disposal to help myself. If I was having a bad day, instead of feeling hopeless, I had things like meditation that could help me. Five years after that first lesson in mindfulness, I now consider myself fully recovered. While mindfulness in itself is not a “cure,” it helped me make the right decisions which led to my recovery.
Here are five things I’ve learned about illness by living mindfully:
Benefits of Mindfulness
1. Treat yourself with kindness.
When I first got ill, I think I subconsciously viewed this as a personal failure. I was supposed to be young, healthy, and athletic. What was wrong with me? I hated telling people that I was sick, and I hated asking for help. I was determined not to let the illness “win.” Mindfulness taught me to extend the same kindness to myself as I would to a loved one that was ill. What would I say if someone in my family or a close friend was sick? Why was I not extending myself these same kindnesses? It taught me that instead of doing battle with myself, I could take the time to rest and heal. I could ask for help and not get down on myself if I couldn’t do a task. This simple change in perception helped me let go of guilt and start taking care of myself.
2. Don’t let your illness define you.
It’s easy to lose your sense of identity when you get ill or begin ME/CFS treatments. Somehow we don’t feel ourselves when we can no longer do the things that we felt defined us. Mindfulness teaches us to see the whole as more than just each part, and that our essential nature is something independent of what we can do. For example, if you didn’t have your arms or legs, would you still be you? What if you didn’t have a body? Would you still be you then? What if your weren’t so stubborn or made less corny jokes? Would you still be you? The thing that defines “me” is more than my physical body or my thoughts. Yet, in day to day life, it’s hard to separate yourself from your thoughts, feelings, and everything going on around you.
When practicing mindfulness meditation, the teacher will encourage you to notice your thoughts and feelings as an observer, rather than getting caught up in these thoughts. This gives you a chance to reconnect with your core self without the constant ups and downs of your reactions to external and internal stressors. Mindfulness meditation can give you a chance to be yourself, without getting overwhelmed by your feelings about your illness. Reconnecting with my sense of self, helped me seek out activities and friendships that energised, rather than drained me.
3. Accept things as they are, not as you wish they were.
Usually, when we are faced with pain or an unpleasant situation, our reaction is to try to avoid it. We wish that we weren’t ill, we wish we didn’t have to feel pain or fatigue. But when you’re ill, your symptoms can’t be avoided or pushed away, and trying to resist the pain only makes things worse. When we try to avoid pain, we are not only suffering from the pain itself but suffering from ‘secondary’ emotions. For example, if you feel fatigue and then think “I hate feeling so tired,” the original pain is your fatigue, and the secondary pain is your feeling: “I hate feeling tired.” Trying to avoid your original pain only frustrates you and makes you feel more tired! If you can practice acceptance of your pain – letting the fatigue be there, then you can eliminate your secondary source of suffering, making the overall pain more manageable. When you practice mindfulness, you learn to accept your present state without judging it or wishing it were different. Accepting things as they are doesn’t mean you need to give up on ever getting well. It actually helps you manage your illness in a more effective way when you accept that some things are beyond your control. And it enables you to focus your energy on the steps that you can take that are within your control.
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4. Listen to your body.
Mindfulness taught me to observe my thoughts, rather than engage with them. This can lessen the spiraling of the mind into all sorts of dark places (ie. I’ll never get better, I’ll never be able to do this, nobody loves me, etc.). If you can detach from your thoughts, you’ll be surprised at what truths your body can bring forward. For example, calming your thoughts opens up a whole new channel for your mind to communicate with your body. Your body has its own wisdom and often knows what it needs. With illnesses like chronic fatigue syndrome, fibromyalgia or Lyme disease, everyone’s experiences are different. What worked for one person may not work for you. Cultivating the skill of listening to your body helps you discover what works for you, what does not, and may give you an idea of something new to try!
5. Build resilience.
Resilience is the ability to become strong, healthy, or successful again after something bad happens. A 2014 study showed that people who are naturally resilient, have lower levels of chronic illness and disability later in life. They also had higher rates of recovery if they did become ill. The good news is, that even though some people seem to be born more resilient than others, resilience is a skill that can be learned. This was a huge lesson to me in how the mind-body connection worked. Mindfulness helped me put my negative thoughts in perspective by being an observer, rather than active engager of these thoughts. This allowed me to dismiss self-defeating thoughts. “I’ll never get well” turned into “I’m not well right now, but I can learn to work with my body to find things that help me feel better.” My goal of recovering from ME/CFS left for a goal of treating my body properly and being as healthy as I can be. Mindfulness helps build the same mental skills as people who are naturally resilient. Adopting these skills could increase your likelihood of recovery.
The change that mindfulness created in how I thought of my own illness helped me to move towards full recovery. I worked with my body instead of against it and created a base for healing and deep rest that was not present before. Although it may not be possible for everyone to completely recover from chronic illness, mindfulness can give you the tools to live a better life with illness, and a much greater potential for a full recovery.
This article was first published on ProHealth.com on November 19, 2015 and was updated on December 23, 2019.
Kayla is a yoga teacher, writer, blogger, and founder of Aroga Yoga. She helps people living with chronic illnesses find relief through yoga. Her goal is to make yoga accessible, so all of her programs are run online. People from all over the world can participate from the comfort of their living rooms. After suffering from CFS for most of her young adult life, Kayla is on a mission to help others live healthier and more fulfilling lives. You can find her on Facebook, Twitter, and Instagram.
1. Lydia K. Manning, Dawn C. Carr, Ben Lennox Kail. Do higher levels of resilience buffer the deleterious impact of chronic illness and disability later in life? The Gerontologist 2014: : gnu068v1-gnu068.