When we develop a chronic illness, our basic way of understanding the world dissolves. At least that how it feels. At least that’s how it felt in my case.

Somewhere in my 2nd year of living with severe multiple chemical sensitivities, I began to feel as if I were in a dying process. Not a physical death (though there were many nights when I wondered if I’d wake up in the morning), but a psychological death. I felt like my way of understanding who I was in relationship to the rest of the world, had been stripped. I was no longer a teacher, or a workshop leader. I was no longer a nature guide, or a healer. Hell, I wasn’t even someone who could buy groceries without feeling like I was going to pass out. I felt purposeless and adrift. Although I was doing everything I could to heal, I wasn’t sure I was someone who was healing. In short, I had begun the descent into the “underworld.”

Illness as an Underworld Journey

There are many descent myths which are relevant to the process of living with and healing from chronic illness. In the myth of Persephone, Persephone is pulled down into the underworld by Hades, against her will (or at least, against her “conscious” will). How many of us living with chronic illness feel as if our lives have been stolen from us? The myth can be read not only as an abduction, however, but also as an evolution. According to the evolution theory, Persephone needed to let go of her identity as a maiden in order to blossom into the full maturity of a queen. Her kidnapping, though terrifying, was necessary. It was only through her trials in the underworld that she could develop the hard won skills required for her new role.

Although the process of becoming ill is, at times, unbearable, it can, like Persephone’s abduction, bring gifts as well. It can help us find gratitude, it can open our hearts, it can help us realize that we need others’ support and open us to receiving that support, it can force us to slow down, and it can help us get our priorities in order. In short, although we would never have consciously chosen it, chronic illness can be a powerful initiation that opens us up to larger possibilities. Instead of a mistake, chronic illness can be a cosmic wake up call.

When I became ill, the descent myths became living metaphors through which I could view my experience. We need meaning like we need nutrients. We need to feel whole in the midst of the horrifying process of becoming, like many who enter the underworld, dismembered.

Sacred Nothingness

Another powerful medicine that myths and archetypal stories hold is that they validate “not-knowing.” They help to contextualize the times in our lives when we are “wandering in the wilderness” or “lost in the labyrinth.”

In the United States, we tend to value knowing over not knowing, and industriousness over non-doing. We like action, forward movement, success. Chronic illness, however, is filled with empty space: lying in bed; waiting for the new supplement to work; waiting to feel better; waiting to get in to see the new doctor; waiting. In a culture that values doing, non-doing, or waiting, can feel like failure.

In the middle of my illness, isolated, alone, “allergic to the world,” and lying in bed, I found myself reading a book by the Mayan Shaman Martin Prechtel. In the book, Prechtel described how the elders (or “hierarchy”) in his village would dress up and wait for their ceremonies to begin. Waiting, Prechtel explained, was as an essential part of the ceremony:

“The hierarchy was good at waiting. All the Tzutujil had to be good at waiting, but the hierarchy were the best there was because their waiting was sacred. They knew after years of ritual that waiting beautifully and well was a major part of every ceremony. Every aspect of a well done ritual (including waiting) was part of what they called food for the spirits.” Martin Prechtel, Long Life, Honey in the Heart.

Wow, I thought, what if I viewed my waiting like that? What if, instead of seeing this illness as a punishment, or a life sentence, I viewed it as a sacred part of a larger ceremony? Prechtel’s words gave me hope in the midst of my despair. Reading and re-reading this passage, I reminded myself that perhaps this illness was also valuable.

Learning to Value Non-Doing

I was recently talking to a poet friend of mine about her creative process. “What are you working on right now?” I asked. “I’m gestating,” she replied. “There’s a lot going on beneath the surface, ideas coalescing, the beginning sparks of a new work, I can’t even articulate it, but I know that everything I’m reading, doing, thinking, feeling, is feeding this not yet written thing.”

Being sick is a lot like this. It requires bravery to recognize gestation as valuable. It requires the willingness to be in the dark, a fertile place, where it looks like nothing is happening, but actually, everything is happening, underground.

Perhaps if we as a culture began to value “non-doing” as much as we valued doing, people living with illness, forced to “drop out,” of the bustle of daily life, wouldn’t feel so lost, unappreciated, and alone. In the meantime, I suggest that those living with chronic illness try and reframe their passage and honor the sacredness of their process.

In order to realize illness as important, in order to assign new meaning to our dissolution, we have to recognize that somewhere there will be an emergence. That healing is happening, regardless of how it appears.

The Trees Begin Their Blossoming in Winter

In the Jewish tradition there is a holiday called Tu Bishvat, which celebrates the birth of the fruit of the trees. What I love about this holiday is that it is incredibly optimistic; it celebrates this birth, not in spring, when the buds are already forming, but in icy February. Tu Bishvat honors the truth of what will be, even when all sensory evidence seems to point to the contrary.

Individuals living with chronic illness can learn a lot from this. Yes, we must accept what is, love ourselves in the midst of our suffering, but, I believe, we must also acknowledge the power that is awakening in us underground, even as we feel that we are falling apart. This underground movement is healing. And the ability to trust this is faith.

We have all read the studies about the power of belief and the placebo effect. Our beliefs can and do effect our bodies’ capacity to heal. If we view our illness as meaningful, view it as a learning process, an evolution, than we are assuming there is a, as Gertrude Stein wrote, a “there, there,” an otherside. Although that otherside may not include the full return to “normal” functioning, it will include some sort of healing—the gifts that the heroine the descent myth emerges with: humility; gratitude; an open heart; a stronger relationship with the divine; the capacity for self love; maturity—and sometimes even physical healing as well.

How to Use Meaning to Cultivate Faith in Your Own Healing

Great advice, you might be thinking, but how do I find faith in my healing process when all I can feel is my suffering? I suggest the following to help you re-contextualize your illness:

1) Honor where you are. Give yourself room to grieve and be with the heartbreak of what it means to live with a chronic illness (for more in depth information on this, see my article “There’s No Right Way to Be Sick: How to Befriend Yourself in the Midst of Suffering” on my website: www.vibrantlivingtherapy.com.

2) Research and read some descent myths. Try the myth of Persephone and the Myth of Innana to start (Google them). Also, if you get the chance, read The Alchemy of Illness, by Kat Duff, a heartwarming and resonate book which helps to make meaning of illness, and try listening to Spiritual Madness, by Carolyn Myss (Sounds True audio).

3) Start talking about your healing process as if it were a transformational journey. Language has power, harness it. When people ask you about your health, talk about it as a transformation. Speak of yourself as if you are in the underworld, as if you are wandering in the wilderness, or in a dark night of the soul, acknowledge that you are the hero or heroine of your own epic journey and that many others have passed this way before you and found their way to the otherside.

4) Grow your support system. Find someone supportive to talk to. Surround yourself by individuals who will share in this “transformational journey” perspective and who have faith in your healing. Also, reach out to what is larger than you. Try journaling or speaking out loud to whatever you consider the divine (God, spirit, your higher self, your own center). Ask for help, over and over, and then feel yourself receiving that help. This last part is essential. It is easy to feel like we are always asking for help and not getting it, but what is it like to feel that help entering into your cells?

5) Begin to journal from the voice of the underworld. Give the stripping and dismemberment process a voice in your journal, but also give voice to the healing that is emerging. Write a letter from you in the future, the one who has already emerged, to the you now who are still in it. What does this “healed” part of yourself have to tell you?

In Summary

How we think and talk about the process of living with chronic illness is as essential in helping us heal as what foods we eat or what supplements or medications we take. As the to the poet, Muriel Rukeyser, wrote “the universe is made of stories, not atoms.” Our bodies, like the universe, are made up of stories as well. What we believe absolutely influences how we feel, and how we feel about how we feel. Stories, descent myths, dark night of the soul metaphors can all help us re-contextualize our illness, view it as a valuable and essential part of a larger healing journey. Seeking resources (books, friends, a therapist, a connection to something larger than ourselves, our own creative process), can help us to re-contextualize, and to heal.

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Sweigh Emily Spilkin, MFA, CHT

I have a sinking suspicion, that it was that same inner critic, that aspect of me which strove for mythic perfection and told me I was unlovable unless I reached it, that was at least partially responsible for my getting sick in the first place. And even though a part of me knew better, I still sometimes managed to allow the critic to convince me that I could strive my way to wellness as well.

Even so, it was the stories of ordinariness, the stories of others accepting themselves in all their muck that gave me the most inspiration.

Radical Self Acceptance

My student and client “Sheila,” told many of those stories. Sheila had MS and hired me as her writing coach for a collection of essays she was putting together about her healing journey. In one of the essays, Sheila wrote of the heartbreakingly human experience of having to wear Depends undergarments at age 36, because she could no longer control her bladder. As we sat and edited the story together, we both broke into a fit of laughter, laughing hysterically then dissolving into tears of gratitude, grit, and grace.

Sheila’s humor, humility, and ability to surrender to what is in the midst of an impossible situation, continues to inspire me today.

Letting Go of Control

When we are sick, we can, like children, try to control our inner reality because the world, and our own bodies, seem so out of control. We feel like we’ve been betrayed by our givens and blame ourselves because we don’t know who else to blame. And because we think that maybe, just maybe, if we figure out how to do a better job of caring for ourselves we’ll get better.

Every four months or so, during my own illness, I would find myself getting really pissed off at God, because I was still sick. I would break down and curse and scream, and yell, and sob, roll on the floor, stomp my feet, throw tantrums, write nasty letters to the universe, and call my friend Alicia to complain.

“I’m pissed off,” I would yell to Alicia. “I hate this, I hate the universe, this isn’t fair!” Alicia would always say the same thing: “I’m so glad to hear you say that.” “Why?” I would ask, “Because it is real,” she would respond.

Because it is Real

It’s actually an incredible relief to stop fighting ourselves and start being with what is. This doesn’t mean we stop trying to heal, or stop taking care of ourselves, or stop eating right, or exercising, but it does mean that we stop beating ourselves up for not getting it right. The truth is, there’s no right way to be sick. When we begin to let go of our ideas about how the world should be, we can start to be with what actually is. And when we finally start to be with what is, we can start to heal. The first step towards transformation is acceptance.

Lean into What is Happening

Rumi, one of my favorite mystic poets, writes eloquently of this acceptance in The Guest House:

“This being human is a guest house. /Every morning a new arrival. /A joy, a depression, a meanness, /some momentary awareness comes/as an unexpected visitor.

Welcome and entertain them all! /Even if they’re a crowd of sorrows, /who violently sweep your house/empty of its furniture,/still, treat each guest honorably./He may be clearing you out /for some new delight.”

Right about now you might be thinking, that’s great advice, but how do I do that? Start by leaning into what is happening rather than away from in. Do you feel stuck, anxious, tired, angry? Then be stuck, anxious, tired, angry. When you notice these “difficult” states arising, try just naming them, instead of fighting. Say to yourself: “I’m angry,” or “I’m anxious.” Then, notice where you feel the sensations of stuckness, anxiety, tiredness, etc. and see if you can, just for a moment, simply be with it. What are its physical sensations? What color is the anger? Where is it located in your body? How big is it? Does it move? The more you grow your capacity to be with yourself, the more you’ll be able to accept yourself, and begin to open your heart to healing.

But: If I Accept Myself, I’ll Never Get Better

Of course, accepting ourselves can be scary, before we begin, it can feel like we are letting go of the hope of getting better. The truth is, although it takes a little practice, you can hold the hope, and the truth of your wellness, and be with the pain, and truth of your illness, at the same time. I call it: Being with what is, and being with what also is.

But: I Need to Keep Doing Things to Care for Myself

Healing from chronic illness requires us to develop multiple attentions, it can feel like a crash course in advanced juggling, a balancing act. Of course you need to keep doing what you do to take care of yourself, but healing, and life for that mater, is not just constructed of doingness, it’s constructed of beingness as well. The doing is still important (getting up, eating, seeking support, spending time with loved ones), it’s the striving you can live without.

But: If I Let Myself Feel How Bad I Feel, I’ll Drown in Despair

I remember how, during those conversations with my friend Alicia I wrote about above, I’d feel a struggle between the desire to let myself feel how bad I felt, and the fear of letting go of the hope of getting better. “I’m afraid to let myself go into the despair,” I’d say. “What if I never come out, or what if I let go of trying to get better.” Alicia would then say the most remarkable thing, “I’ll hold the hope for you, so that you can go into the despair.”

Sometimes, when the despair gets too loud, and we are not able to hold the dual attentions of hope and despair, we need someone else to hold the truth of our health, so we can let ourselves feel the vastness of our struggle. I have come to believe that this kind of support is essential to healing.

In Summary

Illness is a challenging teacher, and moving from dis-ease to wellness can be a rough ride. Learning how to love ourselves in the midst of our suffering is one gift we can give ourselves to support the healing journey and help it to unfold. Learning how to hold the truth of our healing and the pain of our suffering, developing a strong felt sense awareness, learning how to lean into what is happening, and seeking support from individuals who will help us learn how to be with what is, can all aid in our recovery.

Want to Find Out More?

For more articles to support you in your healing journey, subscribe to my newsletter by entering your email in my newsletter signup on the right of the page.

Or, if you already subscribe and feel like you need one on one support or a class for inspiration, I’d be happy to talk to you about private sessions or class offerings. Contact me at 720.771.4778 to set up an appointment today.

Sweigh Emily Spilkin, MFA, CHT