Beginning Again: Living with the Ups and Downs of Life with Chronic Illness

Beginning Again: Living with the Ups and Downs of Life with Chronic Illness

I’m sitting here at home, in the middle of the afternoon, still in my pajamas.  All I have accomplished today is breakfast and coffee.  Over the past, the week my schedule has gone completely off-track.  It started with a significant increase in my endometriosis pain, then worsening insomnia/daytime fatigue, and finally, my neck and upper back decided to get in on the fun by seizing up.  This runaway train was accelerated by lack of exercise, increased anxiety, and cabin fever.

Watching my goals, plans, and self-care routines careen out of control is sometimes harder for me to accept the symptoms that come with a flareup.  Maybe it’s because I have always been a bit of a control freak, but the sense of helplessness, frustration, and self-doubt that accompanies this situation is one of the most difficult aspects of living with fibromyalgia for me. This time, as I was venting about how it felt like my daily life had come tumbling down like a house of cards, a question occurred to me: What if the problem isn’t a failure to control or manage my schedule during a flare-up, but a failure to understand that living with chronic illness inevitably involves ups and downs?

The practice of mindfulness meditation offers some answers to this question.  Renowned mindfulness teacher Sharon Salzberg writes that, in contrast to our conditioned belief that self-blame and fear of failure help us succeed, “ease in letting go and kindness in starting over is a lot more effective”. Repeatedly focusing on negative self-judgment and regret is draining, discouraging and ultimately unsustainable. Meditation can help us practice being compassionate and non-judgemental towards ourselves, helping us to let go and begin again when things don’t go our way. During meditation, the aim is to focus our attention on the present moment, by concentrating on breathing, scanning the body, or repeating a mantra. Inevitably, we lose focus and become distracted by thoughts, worries, plans or emotions. When we realize this has happened, we gently bring our awareness back to the present moment – this breath, this step, this repetition.

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The moment we realize our mind has wandered is the crucial moment of the practice. We have a choice: do we berate ourselves for ‘failing’ and force our attention back to the task at hand? Or do we react with kindness towards ourselves and patiently return our attention to the present moment? Salzberg explains “The invitation to begin again (and again and again) that meditation affords is an invitation to the practice of self-compassion – to heal through letting go rather than harming ourselves with cycles of self-doubt, judgment, and criticism.” From this point of view, meditation is like a playing field where I can train for how to cope with the ups and downs of life with chronic illness. I have realized that I can’t control these fluctuations, but I can change how I relate to them. Instead of reacting with self-recrimination and a sense of helplessness, I can respond with compassion and focus my attention on beginning again in this moment.

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There is something incredibly hopeful about knowing that “Always, we begin again”, as St. Benedict wrote. It can also be daunting to think that you will have to begin again…and again…and again.  Recently, I was introduced to the concept of tapas in yoga philosophy.  The word is derived from the Sanskrit verb “to burn” and is often translated as “fiery discipline.” Nobody other than those who live with chronic illness can understand the degree of strength it takes to wake up and try again in the face of all our daily challenges.  We are experts in tapas without even knowing it!  I believe that we should direct the fiery discipline that living with chronic illness cultivates in us towards starting over in each moment – instead of cracking the whip and pushing ourselves harder. If we are fiercely dedicated to beginning anew after each setback, then we can change our relationship to the difficult experiences we encounter.

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For me, the unpredictability of living with fibromyalgia is one of the hardest parts. Life with chronic illness is an extreme form of constant uncertainty. As people, we tend to prefer stability to uncertainty. Pema Chodron, a Buddhist nun, and author calls this the “fundamental ambiguity of being human” – the longing for predictability and permanence despite the reality that life means constant change (in other words – “this too shall pass”). Chodron argues that resisting this reality leads to suffering and accepting it means freedom. Opening ourselves to the dynamic, changing nature of our experiences releases us from expectations that things should be this way or that way.

For example,  When we try to run away from difficult feelings or hold on to pleasant feelings, we only create more challenges for ourselves.  I feel a sense of freedom by accepting that living with chronic illness means inevitably fluctuating between better and worse days.  Struggling against this by trying to control for every potential outcome is exhausting.  Blaming myself for failing after every flare is depressing.  This doesn’t mean practicing self-care or pacing is pointless!  It just means that I accept that I can’t control every situation and I am not responsible for every setback.

Here is my new intention. Tomorrow, or the next day, or in a few weeks, I’ll have another flare-up.  I will try to understand this as part of the natural cycle of living with my illness. I will be compassionate towards myself when my schedule goes off track.  I will focus my attention on the present moment and the next best thing I can do for myself.  I will draw on the tapas that I have cultivated for strength. And I will begin again.

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