For all of us, life is full of ups and downs. Managing these ups and downs is like riding the waves of a tempestuous sea. Some days the sun is shining and the water is calm. Other days, wind kicks up the chop or storms brew large swells. For me, managing wellness with chronic illness is about learning to ride the waves without access to the weather forecast or a navigation chart. Maybe we all feel this way no matter the challenges we are facing.
Riding the Changing Seas
The Life Cycle Of Chronic Illness
I believe there is a life cycle to chronic illness that affects the seas of our life as we drift along in a small dinghy. Early in the life cycle during initial onset or diagnosis, there is a tsunami of overwhelm. In crisis and chaos, we fall out of the boat in the dead of night. Desperately we struggle to hold on to the boat, grasping for light in the dark. Pure grit gets us through.
Loss & Grief
As we begin to deal with the loss and grief of who we once were and who we may never be, we at least have our hands on the boat as the sun rises behind the clouds. The tsunami has passed, but the seas are incredibly choppy. We are nauseous and exhausted. Knowledge of the hidden, but present sun gives us hope.
Acceptance & Release
Then, moving into acceptance of what is and release of what no longer serves us, we pull ourselves back into the boat. Soaked to the bone, we lie back and allow the emerging sunlight to dry and soothe us. That small seed of hope begins to grow within us while we continue riding the waves.
Healing & Thriving
Having dried off and rested, we sit up and begin to heal and thrive in that small little boat of ours. The warmth of the sun grows stronger. The seas begin to calm and become more rhythmic. Even though the distance between the rise and fall of the waves feels unfamiliar, this doesn’t stop us from beginning to gain a new understanding of ourselves. We tune into our bodies, listen to the clues. These clues inform us of impending weather as we learn about our illness and it’s triggers. They also help us to create our own map based on our values and intuition. We realize we don’t want anyone else’s map telling us where to go.
Finally, the ocean calms with a low, slow roll and the wind becomes a gentle breeze. The skies clear. With the sun shining brightly down, we put up our sails and begin to direct our boat towards our desired destination. We choose how we will now serve others. So often, we turn to help others in the water get back in their boat, dry off, let go, or discover their clues.
Okay, okay. I get it. That last bit is a bit bucolic. Hear me out. This life cycle may take years to move through. All along the way, the weather changes frequently. We may be riding the waves, making progress, and feeling good. Then bam! We are gut-punched by a storm or flare-up. It’s like our boat has gotten caught in the surf and the wave we are riding has smashed us into the shore. The hard truth is that flare-ups can happen at any point, but as we move through the life cycle, we gain a better understanding of what sets off the flare-ups. We learn to navigate the waters better, getting stronger and wiser.
Learning to Ride the Waves
Learning these things is both an act of preservation and a choice. We need to learn our triggers, trust our intuition, and allow the growth. It’s how we keep the boat and ourselves afloat. Even though we need it, we have to choose it. We have to consciously do the work in each phase of the life cycle. Doing the work gives us the strength and wisdom to draw our map, set the sails, and steer our boat.
It’s worth noting that a flaw in this analogy could be in the interpretation that we are in the water all by ourselves. It’s so easy to feel isolated and alone. The reality is that there are a ton of sailors out there wanting to help and guide us. We are never truly alone.
Riding the Waves of My Illness
Personally, I’ve been riding the waves of my illness for over 2.5 years. During that time, I’ve moved through the first four phases of the chronic illness lifecycle at least once. The sun has had periods of brightness that filled me with such hope and possibility as discussed in Owning My Happy, Holding The And. I have also slammed back into the shore far too many times as most recently described in Push-Push-Crash. Right now, after riding the waves high on the crest for a couple of weeks, I am back in the trough. But I am not as deep in the well of the wave this time. I caught it earlier and am managing it better. It’s clear to me what I need to do and how I need to take care of myself in order to rise again. There are some little consistent steps that I need to make and some massive external changes that I need help with. I am starting with what I can do and what I know; building from there.