Over the winter, I got the words “nothing is wasted” tattooed on my arm.
I’ve spent so much time not talking about what matters because I’ve been too afraid of getting it wrong. Of saying something unhelpful, or revealing a part of myself that is still on-the-way, still shrouded by redemption’s beginnings.
But strangely enough, I have never felt more outside of my purpose than I did when I was deciding which parts of my heart to show and which ones to leave behind.
So, I’m dusting off the old blog to tell a story I should’ve told a long time ago.
For years, I was sitting in front of doctors getting multiple diagnoses, but seeing the same shake of the head. Always follow-ups, more tests, and more bleary ER visits in the middle of the night.
I had a stack of pain pills that my doctors would unwillingly hand out to the twenty-something who repeatedly showed up to the office with “pain management problems”. After a particularly bad attack, I was told: “Call a Neurosurgeon, we think you had a stroke.”
As anyone with a chronic illness knows, getting a solid diagnosis or even just a simple cause for all the pain feels like navigating a minefield.
One year into my marriage, I got my answer. It went like this: “Here’s a cure that helped some people, but not everyone.” “We don’t know enough about this to tell you if it will get better”. “Try these medications, we’ve seen good results”. “Have you thought of surgery?”.
My symptoms got better than they had been in years, but that pain… the one that shocked me awake and ripped through my body? The one that made me gasp for air as my husband rocked me back and forth choking back his own tears? It didn’t get better. Nothing touched it.
I’d wake up the next morning in a shell of a body, but around me, life would somehow have returned to normal. I couldn’t walk, but as my husband carried me around the house, there were the messages on my phone: invitations I’d need to cancel, friends that would feel hurt, and people who would wonder just how bad the pain really could be. Dishes piled up on the sink, work deadlines ticked away.
As I looked around, I’d feel that old ache settle heavily on my lungs: I was so very tired. My body was tired. I was tired of constantly fighting to get better only to hit another new low, a new setback. Tired of needing help to accomplish the most basic things. But mostly, I was so tired of deciding whether to keep quiet or to speak up for myself when someone questioned my pain.
Because a couple days would pass and my body would begin to recover from the attack. I’d go to my social engagements and smile as if nothing had happened. People would look at me and remark at how good I seemed. I’d nod, say my thanks. What was I supposed to say? “Hey guys, I thought I was going to die. Do you know what that feels like?”
Maybe I should’ve. And I would try, sometimes. Whispers of the attacks, mentions of my anxiety and depression, how small my world had become. Often, I was met with: “just calm down,” “it’s all in your head”, “my friend had it so much worse.”
I felt as though I must be going crazy, fighting wars and coming up for air with hands caked in blood, but to anyone looking in? Imperceptible. It felt like my hope had reached a dead end.
For years, I lived as if my body was the only one that felt as inhospitable as the Sahara Desert, as if I was the only one who didn’t know how to love something that had betrayed me so cruelly. I acted as though the mental illness I experienced was something to be ashamed of, to stuff in a box and pretend it didn’t exist.
I carried around resentment like an armor against all the people I’d tried to talk to, the ones who dismissed, or invalidated my pain: I used this against anyone who genuinely wanted to know. I thought that all my broken edges could never be used for anything good in a world that is…
…broken.
That’s the thing, isn’t it? We live in a world that is fraying at the seams. Every day we show up with our patched-up lives and layers of trauma that no one will ever know the depths of. My story is just a fraction of the narratives being written out. If I walk around with my closed box and shame, I’m nudging them to do the same.
It didn’t matter how I’d gotten to this fake façade of a life, but I began to see that if I chose to stay there—in that resentment and fear of being invalidated—then I might be canceling out the purpose that all this suffering was gently offering me.
For the first time in a long while, I realized that I didn’t need anyone to validate my pain to make it real. I didn’t need to talk about my story in the hopes that someone would come alongside and give me a medal of bravery. I knew my darkness: my body was living, breathing evidence.
Once I freed myself from any outside expectations, I felt brave enough to speak. I realized that all this wasn’t a waste, and the darkness I was living through could be used to help someone else feel less alone.
I will never have the right words to talk about chronic and mental illness. All I can do is honestly shed light on my journey, and pray that it brings light to you too.
As I sit here, spring slowly waking up beneath a frigid earth, I’m still somewhere in the messy middle of all this. Years have passed, but my anxiety has still made my life, my circles, very small. I still hardly ever drive. I still wake up at night with my heart pounding, unable to locate what had frightened me so deeply. The list goes on.
At the beginning of the year, my husband and I found out we were pregnant. We were shocked. It was a miracle. With Endometriosis, the numbers are often stacked against you. But now, as my body prepares and nurtures this new life, it still bears the scars. It still remembers every attack.
Following our happy news, a dear friend asked me, “do you feel heaven rejoicing with you?”
I’ve thought about this a lot. Not just in heaven’s gentle song when goodness arises, but in the quiet company on the heavy days too. The days that break our heart. I picture Jesus standing over all the suffering, His father-heart aching at it all. I’ve always deeply felt that He mourns with us, that in the presence of our brokenness, He can’t help thinking that this isn’t how it was meant to be at all.
Life is such a strange blend of beauty and loss, a bittersweet dance of grace. I don’t know if there are always happy endings, in this life. Often with chronic or mental illness, there is only improvement, but not complete restoration. I guess what I’m trying to say is that I’m learning how to live in that not-quite. Learning how to look at my life and see all the beauty and growth it holds, even here, especially here.
I have been gifted a small circle of dear, dear friends who know and understand. My social life looks different than most, but it’s exactly what I need. Here, in the glow of being loved over state lines or from a few blocks away, I find my story shaping the words I use to speak to others. When I allow it, it softens my touch, lends an understanding ear when panic confuses and breaks. In situations I normally wouldn’t be able to speak into, I am able to connect.
I am not the same person I was before my illness and as time goes by, I’m realizing I wouldn’t want to be her again. I have tools and weapons now that I would’ve never had before. My heart is stronger, but softer too. I’ve been pulled apart, questioned everything I stood on, and rebuilt… what is left is living and tried.
These days, my shoulders feel lighter with the knowledge that redemption is God’s work. That even in something that could’ve destroyed me, I’m seeing such beauty come from the mess. I’ve realized that this wasn’t a dead end after all, but simply a new way of living filled with even more purpose.