By Laura Stepnicka

Invisible illnesses are all I know and have reshaped every fiber of my being. Many develop mental anguish after years of managing crippling chronic pain - but I went reverse course. 

In 2016, I was in a battle for my life. That battle was my own internal battle. I nearly did not survive. My mind was being ravaged by what would soon be diagnosed Major Depressive Disorder. The subtle signs had been running under the current for some time, but once depression truly took root, it would not relent. Depression ravaged my mind and distorted every single shred of reality. Of perception. Of clarity. 

 During the darkest depths of my battle with mental illness, the disease stole my strength, clarity, cognitive functioning, and ability to make even the simplest of decisions. I became a shell of a human. The previously super social creature I was became a mute. I withdrew from people I loved. I stopped being able to do my job. I stopped knowing how to live. The mind is so powerful and once illness invades, disease wants to be the victor.  

In the 3 years following 2016, there were entirely too many moments staring at my broken, defeated face in the mirror. It became a battle of self-will for survival. Fight for one more hour. And then one more.

Suddenly, the years have passed, and I am a survivor. I am strong. Resilient. Empathetic. I know the depths of finding yourself swimming under current, constantly attempting one second above water. The undercurrent is unpredictable. Especially when it seems that you have the heaviest weights strapped to your ankles, bringing you further away from air. One breath. Come up for air. Back underwater. I know the depths of the deepest, darkest hole and fought my way out. I was brought back down and tested many times.

I taught myself how to rebuild. The healing journey always starts within ourselves. I had numerous resources and support that gave me an advantage, but the real work is internal. The treatment options I explored and utilized knew no bounds. When medications were not working, I researched and tried alternative treatment options, at the guidance of my doctor. When my doctor no longer served me, I found new doctors. No rock was left unturned in my fight to live. 

Absolute sheer will and leaning into the right resources is what allowed me to very slowly start rebuilding. I was building back up from the ashes.

 My mental health journey changed me, for the better. I found my voice and my purpose. I found my footing by honoring the pain, but embracing the beautiful parts of me that I discovered along the journey. I sat in the pain. I fought the hardest of fights. I did the work.

The invisible scars of my battles are etched in every fiber of who I am, but they are what make me who I am today. I actively practice gratitude. I find and cultivate joy in the smallest ways.

Shortly after I started healing mentally; I experienced what would become a lifelong journey battling another invisible illness: chronic pain. 

 After navigating some of the most renowned hospital systems to help understand and treat my chronic pain - constantly shifting, pivoting and advocating for my care - I see how much those of us with invisible illnesses have to advocate to be taken seriously medical. Illnesses that cannot be seen require medical professionals to trust their patients. For women, symptoms that cannot be seen are entirely too often considered psychosomatic and in our heads.

 The onslaught of my chronic pain was similar to my diagnosis in 2016 with Major Depressive Disorder. Fast and furious.

I lifted my 30 pound nephew one day, who I had lifted often for the first 1.5 years of his life, and that was the beginning of my chronic pain journey. Pain arrived suddenly and never went away. Soon after that incident, after being turned away by a medical provider, the bulging disc hit a nerve cavity that has now compromised my right leg. I drive with my left foot. I often limp. I wear a specialty belt and have a lumbar pillow that comes with me everywhere I go. I wear compression socks and take two baths a day with essential oils and bath salts. Despite these efforts, the nerve damage spread to both hands and I developed carpal tunnel out of nowhere. It was at the stage of needing surgery. And then it healed. To me, this is a testament to the strength of cultivating a strong, resilient mind.

Nearly every single moment, awake or not, for the last 2 ½ years, I am in varying degrees of pain. It is difficult to get the care you need for illnesses that cannot be seen to the outward eye. Despite that, doctors have shared that my body is in overdrive trying to heal itself. I owe that to the strength and perseverance of my mind. The mind that turned against me and told me I was not enough. That same mind now works for me to help me fight my new invisible illness that will also be with me for life.  

The work I did to heal myself through my mental anguish, the ability to finally sit and feel the mental turmoil, allowed me to climb out of my personal purgatory. The strength of your mind is humbling. 

We all hold pain and uncertainty differently. We all find strength, resilience, fight our internal battle, differently.  I cannot tell you how many days I looked in the mirror, with puffy, swollen, defeated eyes and tears streaming down my face and literally, out loud, spoke to my reflection. I willed myself to keep fighting. To keep fighting. One more breath. One more moment. One more day. That was my life.  

And now, I have built a life that is beyond what I could have imagined. The person I was in those years of torment, is never far, but she grounds me. She reminds me to be grateful. To appreciate the small, simple moments. To persevere. She is also always in physical pain, but people do not believe what they cannot see.

Laura Stepnicka is a Chicago native who lives with two invisible illnesses: depression and chronic pain. These invisible illnesses have changed every fiber of her being and she is very aware that her conditions are part of a lifelong journey of healing and growth. A journey she has fully embraced. Laura decided in early 2021 to make several lifestyle changes and moved to a one stoplight kind of town in Southwest Michigan, nestled in her log cabin in the trees with her sweetest foster fail, Piper. More on her blog, Cocoon for the Kindred.

Segment 4 of 6 in “Soul Chronicles for the Chronically Ill”

by Shaler McClure Wright

I’d like to thank Health Story Collaborative for working with me to bring you “Soul Chronicles for the Chronically Ill.” This monthly audio series offers a soulful perspective on the unique challenges of living with ongoing health conditions. My name is Shaler McClure Wright and I’m a writer/artist living with Chronic Inflammatory Response Syndrome.

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Health Story Collaborative · Illness And Omicron

In Soul Chronicle One, “Shifting the Body from Enemy to Ally,” I spoke of how we might learn to see illness as an opportunity, and symptoms as clues pointing to something in our psyche that needs attention. Illness in the body offers us the chance to simultaneously ask ourselves, “What in our soul might need healing too?” Where is the sorrow, regret or soul-wound that might be bonded with this physical pain? And then we might notice that when we pay attention to our soul-pain, our physical pain benefits. This widening of the lens, or reframing of our health circumstances can be a powerful tool. And the more we practice listening to our body’s wisdom, the more we can appreciate our body’s deep connection with soul.

 But nothing in life is static. And over time, we’re bound to face unpleasant circumstances that work to break this connection.

 Just last month, my soulful perspective was challenged. After the holidays, like thousands of others, I got a breakthrough infection of Omicron. I imagine many of you have had Omicron too, and if not, maybe you’re faced with fear of it as an unknown. So I’d like to share my experience.

 For the record, I was lucky; for me it was mostly like a bad case of the flu. But instead of giving you a list of my symptoms and discomforts, I’d like to read you one of my favorite poems, one  I return to when I feel ill. This time I’ll use it as a way to talk about elements of my covid experience.  Here is “Illness; a Conversation” by Joyce Sidman, from her children’s book “What the Heart Knows.” Sidman is having a conversation with her body while ill:

“I asked my feet why they could not walk

and they said, We are treading water.

I asked my legs why they buckled and fell

and they said, We are growing roots.

 I asked my fingers why they had loosened their grip

on the world and they said, It is too hard to hold.

We are gathering clouds instead.

Why? I asked my eyes, which kept crying and crying,

and they said, We are waiting for the very last tear.

Speak! I told my lips, but my voice was not my own.

So I asked my heart, Who am I now?

and my heart said, The you underneath the you.

And I asked my soul, Who will I be?

and my soul answered,

        The one whose heart is open,

        the one whose eyes are clear,

        the one whose hands are full of sky.”

During Omicron, the first hint I had that something was wrong was feeling an overwhelming urge to lie down in the middle of the day. I just wanted to get off my feet because my legs were aching. Perhaps Sidman has felt a similar ache:

“I asked my feet why they could not walk and they said, we are treading water.”

 When our bodies are fighting an infection we need to give them all the energy we can muster.  And if at some point our bodies resist movement,  it’s because beneath the surface, our bodies are working hard to keep us afloat. While fighting Omicron, it helped me to imagine having web-like feet, paddling to hold me steady over the surface of a deep pool of discomfort. I knew the pain was there, and every so often I might drift into a cold spot that chilled me to the bone, but my treading feet kept me away from the coldest parts.

“I asked my legs why they buckled and fell and they said, we are growing roots.”

Fatigue and lack of strength are also part of the Omicron experience, and each time I tried to get up and get things done, my shaky legs made it clear I was going nowhere. So instead of persisting, I used that time to imagine deepening my roots in the world, and that image gave me permission to surrender to stillness.

“I asked my fingers why they had loosened their grip on the world and they said, it is too hard to hold. We are gathering clouds instead.”

Sometimes we need a break from the pressures of daily life, and one of the opportunities of illness (if you will), is time. When we’re stuck in bed we can use that time to redirect our attention and visualize the world as we would like to see it. Or perhaps more to the point, as we would like to feel it.  For me, the image of gathering clouds feels much like gathering hopes and dreams. Much better than worrying! And just as it’s not possible to catch a cloud with a clenched fist, it’s also not possible to dream a dream until we loosen our hold on the fear that keeps us from falling asleep.

“I asked my heart, who am I now? And my heart said, the you underneath the you.”

When I was sick with Omicron I had a week-long headache that made it hard to think straight. I couldn’t read or write and barely had the energy to watch tv. My brain was not in charge. So for me, ‘the you underneath the you’ is my heart-self rather than my head-self. And in times of illness, our heart-self cuts through the tangled web of our thinking mind, to clear the way for inner strength to rise.

“I asked my soul, who will I be? And my soul answered, ‘The one whose heart is open, the one whose eyes are clear, the one whose hands are full of sky.’”

When we feel ill we can’t help but wonder how the experience might change us. “Who am I now?”  “How long will it take to get back my energy? What if I’m left weaker?” And if any of these things turn out to be true, the next step would be to put them in perspective, holding them shoulder to shoulder with the aspects of ourselves that illness makes stronger—our compassion, awareness and appreciation of beauty. And from that vantage point, though still significant, the potential remnants of illness are less looming.

One thing that Sidman does not address is the loneliness that often accompanies illness. When I had Omicron, I needed to isolate from my family, and it was the sense isolation that was hardest for me. Feeling alone while in pain can make the pain feel more intense. Feeling alone while in pain opens the door to worry. And when worry makes her entrance, we’re likely to hear a round of unwelcome but familiar ruminations circling through our minds. “What if there’s?… Is that from?.. Will it also?…” You know the drill.

When anticipatory anxiety powers our mental list of things to worry about, it’s exhausting, circular and endless. Like a hamster on a wheel. And if not reckoned with, our anticipatory anxiety can grow even stronger—into generalized health anxiety, where we fear the worst for our bodies without clear reason.

That said, for those of us with chronic illness, the possibility of developing Long Covid is a very real concern. Could Omicron (even though it’s thought to be relatively mild) be capable of leaving us with Long Covid, as the other strains have? After Omicron I worried that every lingering discomfort might be caused by some residual virus taking up permanent residence in my body. I imagined it as a stealth invader, hiding in wait. And that weakened my resolve to heal—not a trade off anyone with chronic illness should be willing to make.

Even if Omicron doesn’t cause much harm on its own, could it still serve as a catalyst, or triggering event for the return of older, more familiar symptoms? With Omicron, our anticipatory fear can be more intense because the virus is shrouded in mystery. Because it is new. Because people with ongoing health conditions, having supposedly recovered from Covid, may only now be realizing how the virus is still affecting them.

And, here’s the part we don’t like to hear when speaking of anticipatory fear—anticipatory fear is dangerous because sometimes fear itself can manifest the pain. There. I said it. The fear of Long Covid can plant us firmly on the unwelcome doorstep of somatic illness; a threshold we prefer not to cross.

I remind myself that I have many tools to cope with illness. If the Omicron variant were to persist, or trigger other symptoms, well, I know how to handle it—step by step and breath by breath. And when I feel my anxiety ratcheting up, I use the power of soul to calm my fear.

Joyce Sidman’s poem, “Illness, a Conversation” speaks to my soul. Do you have a poem, painting, sculpture, place, or song that speaks to your soul?

If we can remain open, fear can be an invitation to dialogue with soul. Swiss psychologist Carl Jung tells us, “Soul and body are not two things. They are one.” (Carl Jung, Zarathustra Seminar, p 355.) When we partner with soul, our bodies have a better chance of staying in the moment and handling one discomfort at a time. It might be a struggle, but it’s a fight worth fighting. Fear is corrosive to our health. Soul is restorative. Be kind to yourself and choose Soul.

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Shaler McClure Wright is fascinated with the mysteries of creative process, the healing power of creativity, and the creative synthesis of method acting, intuitive learning and depth psychology. A graduate of Wesleyan University and The Actors Studio, Shaler has worked as an actor, writer and educator for more than 40 years, and lives in southeastern Connecticut with her son and husband.

Website: www.shalermcclurewright.com

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Go here for more episodes of our Soul Chronicles series.