Coping With Dis-ease: Slowing into Chronic Illness

I hate the word chronic, I do. Anything that implies permanence does not sit well with me. I think as human beings we are innately drawn toward change because change is intrinsically part of the human condition. We began as cells, cells that were changing- evolving- morphing into other cells that began to form organs. All of us started out as teeny, tiny, little beings who were created out of a change that took place in our mother’s body. We were created out of change, for change.

It’s no wonder why the word chronic doesn’t sit well with most of us; chronic, by definition, goes against human nature. I Googled some synonyms and felt my mood steadily declining a I read through them: Constant. Persistent. Long-lasting. Ceaseless. Unabating. Unending. Incurrable. Sounds appealing right?

Chronic almost always brings with it a negative connotation; we don’t often hear people talk about their chronic joy or chronic peace. We use the word chronic to describe unpleasant experiences. Chronic depression. Chronic illness. Chronic pain.

For the longest time, I was hesitant to use the phrase chronic illness to describe the steady decline in my body’s ability to function “normally.” I was hesitant because I thought if I told people I was chronically ill, they would think I had given up. Or more importantly, I would think I had given up.

I thought accepting my illness as chronic meant I had become hopeless.

Hope, to me, was always dependent outcomes. Having hope in regards to my illnesses meant clinging to the idea that someday I would be fixed or cured. Hope rested in the expectation that the pain would disappear.

It’s been over five years of functioning daily with some sort of pain. This past year, my daily pain level has been at a five or above. If a friend asks how I’m feeling and I respond with, ” I’m feeling good today,” it means my pain level is at a five. Most people go to the Emergency Room with pain levels of six or seven, just to give you some context. I feel exhausted (first trimester pregnancy type of exhausted) and flu-like every single day. My joints and muscles are stiff and sore and I experience numbness and tingling in my arms, legs, chest and back multiple times per day. And it’s not going away. It’s been over a year of all of these symptoms daily. ALL of them DAILY.

I don’t write this with the intention of evoking sympathy or branding myself a martyr. I write this solely to draw awareness to how devastating my reality had to get before I would use the word chronic.

Just in the past few months have I started to make peace with the idea that I have a chronic illness. I have several actually, and they are not going to magically disappear. I’m not going to wake up one day and suddenly feel better. The reality that I’m facing is simple: there will be good days (remember what good now means) and there will be bad days. There will be days when it takes twenty minutes to get out of bed and days when it takes two hours. Days when I can show up for people and keep my commitments and days when I can’t.

But owning my illness as chronic does not mean I have become void of hope. It doesn’t mean I have given up. It means that I have reached a new level of acceptance and understanding of the path I am walking. Hope no longer depends on the absence of symptoms; it is found in the midst of the symptoms, despite the symptoms.

Hope now comes in the unwavering confidence that no matter how I’m feeling, I am loved and accepted, as I am, in each and every moment.

Hope comes in the knowledge that I am never alone.

Hope comes in the permission I allow myself to care for a body that needs a little extra love.

The hardest, most crucial piece of self care for me has been slowing down.

I’m used to operating in one of two speeds- fast and faster; I’ve always been this way. I don’t walk, I run; I don’t jump, I leap. I’m a doer, a busy body; I thrive in chaos and commotion. Or rather, I used to thrive in chaos and commotion.

But the doing and the running and the crazy busy life is not fit for me anymore. My body can’t handle it; my illness can’t afford it. I am slowly learning how to slow down. How to rest when my body is screaming “stop!” How to recognize my limits and most importantly, how to say “no.”

It’s becoming obvious that the key to my slowing down rests in my ability to say “no.” I’m still working on this; I’m a people pleaser and a giver- helping others brings me great joy. But giving myself to others is starting to cost me my health; a price I am no longer willing to pay.

I am beginning to find joy in caring for myself the way I used to care for others.

I’m learning to let go of people’s response to me telling them no- their emotional reaction is not my responsibility. My friends and family won’t love me any less if I don’t attend their child’s birthday party.

And I am learning that slowing down isn’t just vital for my body but my mind as well. My head gets crazy, especially when my body is still. Thoughts swirl, fears crop up, guilt, remorse, self-pity start to creep in. That’s part of why I loved staying busy- to avoid my thoughts and feelings. But I’m finally learning how to be still. How to stop my thoughts from taking me too far out of reality. I focus on my breath. I use grounding techniques. I look at me feet, I feel my legs resting on top of my bed. As I listen to the rhythm of the clock as it tics, my thoughts fade away.

Accepting my illness as chronic doesn’t mean I’ve given up on life. It doesn’t mean I’m void of hope. Chronic illness is not an aversion to joy or an absence of peace. It’s just a path that was chosen for me. And I’m discovering, the longer I walk this path with an open heart and mind, the more I find myself.

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