Living with Chronic Illness & Pain
I woke up, stiff. Unable to move. My right shoulder was frozen in place and my hips screamed as they begged to split from my torso.
Breathing was labored — constricted — due to the tight muscles spreading like tight bands of octopus ink dripped across my chest.
I felt like a sub, my dom [my pain] — tying my muscles in knots — leaving my body in paralyzed bondage.
Sleep allusive. Memory, trapped behind a veil of fog. Comprehension, a thing of the ancient past.
Heartburn. Nausea. Diarrhea. I resembled a Pepto commercial.
And I was coming undone.
My depression left me feeling hopeless. Complex PTSD. Severe anxiety. Constant worry and panic terrorizing my soul.
Test after test after test. Three major surgeries. Multiple cancer scares. I lost half a breast and half an areola.
Grief devoured any remnants of hope that remained and I died a thousand small deaths.
The cruelty — while my heart shattered — it continued to beat.
And yet, I continued to show up. To push through.
While my body screamed for rest, my soul screamed to create, my mind screamed to produce, and my heart lay tattered in fabric and thread — the seams unraveled — undone. Ravaged by the sands of time.
I’ve had a history of feeling defective and I refused to succumb. I refused to surrender. I refused to honor the questions with answers that made sense.
Instead, I let words like lazy and always sick and asking glances, “Again?” eat at my heart. Because to me those words mean weak and no longer relevant. Or worse still, fake.
Then, one day, just like that — a diagnosis came. Fibromyalgia. My doctor and I had been treating each symptom separately. Put together — I met the criteria 110%.
And I felt vindicated. Validated. Hopeful.
There’s something to be said about those of us who live and deal with chronic illness and chronic pain. The bravery. The hiding. The strong face. The not wanting sympathy or worse — the judgment. The labels and stories and projections.
The advice. So much advice. And guilt — too much guilt.
Guilt or resentment or me? Those seem to be my three main options for decision making and its been a hard-wired thing to not feel selfish. To understand, this is a need. This is the only way my body will allow me to move and live and be.
That my body needs rest and slowness and lots and lots of pillows and heat. It cannot live by schedules and promises and commitments and alarms.
My soul needs understanding and my heart longs to be seen.
To understand this is a somatic illness — time spent too long in constriction. Adrenals that have been overworked. Year after year of stress. Of holding it all in. Followed by pain — so much pain — and Rip Van Wrinkle fatigue and exhaustion.
The battle with the crazies, wondering if you are simply mad. The questions. The self-doubt. Am I a hypochondriac? The proving. The advocating.
To demand, to stand up, to speak up — to say that while all the tests — the x-rays and cat scans and ultrasounds and biopsies are clear — I still hurt. I still matter. I’m still here. I am not nuts and something is very, very wrong with me.
And today, I just want to say to those who understand this life — the life lived with pain and chronic illness — I see you. I feel you. I understand.
I will not be the one sitting beside you asking, “What are you holding onto? What do you need to release? Who do you need to forgive?”
Because I’ve done that. I’ve healed. I’ve let go. I watched my ego burn.
And yet, still I hurt. I still feel the pain and the exhaustion and the memory loss and the fog.
I know what it is to wonder if your entire body is riddled with arthritis or if Dementia has come knocking at your door.
I will not blame you for your illness, nor will I gaslight and hurl words of destruction your way. I will not call you lazy. I will not make you feel irrelevant.
I will not ask you, “Why are you holding onto____? What are you gaining from your illness?” I will not tell you how your diagnosis doesn’t define you. Because I know that sometimes our pain — day in and day out — can dictate and define and change and derail even the best laid plans.
I will not be the one with a pack mentality that says, “If you can no longer do x,y, and z — you will be left behind.” For we are more than just wolf and raven. We are human and we’re here to understand the human experience.
Instead, I will offer a listening ear. Some tea or coffee. A shoulder to cry on. A heating pad. A soul that says, “I see you. You are here. You are relevant. You matter.” And maybe more importantly, “I believe you.”
