EDITED ON NOV 26, 2025:
Two days after I posted about my RA (see below the break), spilling my heart to the ether… I went into remission.
I had a final test planned of my second round of meds. I’d come off anti-inflammatories for three days, get labs drawn, and presumably flare somewhere in between the two since the meds had already failed this test once.
But I didn’t flare. I had mild pain in one shoulder for a few hours and it passed. My labs are better than they’ve ever been. Better than labs I had at 12 years old which almost begs more questions than it answers, but not quite. My inflammatory markers are undetectable. I cried instantly when I read the results.
As excited as I’ve been to share the news, there’s also a terrified part of me that has been disappointed so many times in this process, I needed to see it hold. See it hang around. Let the relief actually sink in. Feel safe in it. The timing feels almost unbelievable, but perhaps it couldn’t have happened any other way. Even though posting that update stirred things up for me emotionally, it’s not lost on me that I released an immense amount of shame, fear, and guilt that day.
It’s been two months of absolute body bliss, e-scootering for miles with my partner, doubling down on strength training. Feeling and watching my body get stronger and happier. The relief feels foreign and familiar all at once. I can’t even begin to express how grateful I am for this time.
Thank you all endlessly for the gift of allowing me to be seen and witnessed by you. This is one vulnerability hangover that might have literally saved my life
SEP 12, 2025:
It’s been 437 days since my last post on social media and 623 days since the one before that. Longer since I’ve updated my website or any other online presence. Though the evidence may be contrary, I’m still doing full-time photography and have nearly three years of work backed up to share — if I ever get around to it. I’m in no rush.
I’ve taken this time to try to heal. Thousands of dollars, endless tears. I walked away with a diagnosis and a very different life.
After overworking myself for a decade building this business, dealing with the devastating unexpected loss of my 2-year-old soulmate cat, followed closely by the best and closest friend I’ve ever known, cutting me off with breadcrumbs for excuses…
my mind and body gave out.
The grief was almost unimaginable. Two of the most important beings in my life, gone in a flash. Tragedy and avoidance, the perfect combo for my own personal hell. The physical pain started about six months later, after a short bout of Covid, an IUD removal, a stomach infection, and all that grief. The perfect storm.
It took a year and a half — and countless “You’re just stressed, lose weight” conversations with shitty white male doctors — to finally learn I have seronegative Rheumatoid Arthritis. A misunderstood and poorly named disease. An umbrella term really, a catch all, a gentle we-don’t-know-what-the-fuck-is-wrong-with-you. An autoimmune nightmare, more like lupus than arthritis. My body attacks itself daily: joints, heart, lungs, stomach, eyes, hair, almost nothing untouched.
It’s been described as having sandpaper in your joints. Any movement, any position—pain. I had many of the predictable symptoms: swollen fingers, hot joints, fatigue, among others. Nerve pain shot from shoulder to fingertips. I woke every hour with numb hands, no matter the position. Pain flared in my large joints, not typical of RA. Constant nausea. The list kept growing until I had to start one just to keep track. I was trapped in an endless cycle of inflammation and no answers.
Thankfully, this disease can be managed. It’s not the death sentence it used to be, but treatment is often lifelong and requires constant tweaking of medications and massive lifestyle changes. I’ve haven’t found my current perfect combo yet, but the pain is less. Manageable.
I learned later that my father — who hasn’t spoken to me for well over ten years after finding out my now ex-wife is trans — was diagnosed with the same disease seven years ago. Had I known, my diagnosis could have come at least a year earlier: a year less pain, less money thrown at false solutions, less hopelessness, less asking my partner if I’d ever not be in pain, hearing “yes” and not believing it.
It was the cherry on top of an already deep abandonment wound.
I haven’t wanted to be open about this for fear of what people would think, my clients especially. Would they abandon me too? Would they ask themselves, “Can she still do her job? Shoot my wedding? Can I trust her to be able to?” And the ultimate fear at the root of it all — “is she good enough?”
I couldn’t answer these questions for a long time. Shame and guilt consumed me. A business I’ve worked 13 years to build felt like it hung by a thread. I was terrified of losing anything else — especially my livelihood, the very thing that could dig me out of this hole.
I’m truly sorry I’ve been absent and in a roundabout way I feel… dishonest? I know I don’t owe anyone my truth, but there’s really no way to describe what it feels like to watch your life fall apart like that.
I’m picking up the pieces slowly. I’m shocked to say that business is good. Somehow, this thing that feels like it has a life of its very own has supported me through this. It gave me space to adjust my schedule as needed, provided financial security through endless treatments and regimens, and remained a bustling and active center of my life.
A North Star in a sea of mucky black, that I often take for granted but leads me home regardless.
I’ve made changes, of course. I’m no longer taking weddings over six hours. It was the biggest flex my business could have made toward my health. It was scary — but it worked. I have new limits and I’m honoring them in ways I never have before. I’m beyond grateful my business can do the same.
I’ve been splitting my time at a hot springs retreat center in Oregon called Breitenbush. Trading officework for lodging, meals, and a little cash but more importantly — a sense of peace I didn’t know was possible, and a community that makes my broken heart so full I can’t believe it hasn’t burst right out of my chest.
Countless hours spent sunbathing nude by the river, letting the waters, the trees, the dirt, and the energy of this land carry some of the pain. Moving it slowly out of my body or at the very least, helping me find an inner container to store it safely.
If I have one piece of advice, it’s this: take your grief seriously. I thought I was doing grief “right” by letting it consume me, but I let it stay too long. Too many nights spent rolling around in it, not moving through it. Feel it, yes — but try not to get stuck. Stagnant grief can unsettle the body so deeply the immune system mistakes it for the enemy.
Ultimately though, there is no magical recipe for any of this. Life lifes, and we deal.
My amazing partner and beautiful mother have been my lifeline — caring for me on days I couldn’t get off the couch, wiping away two years of tears I wasn’t sure would ever stop, validating my every ache and pain, and giving me space to find healing even if it’s six hours away, two weeks at a time.
As much abandonment as I’ve experienced has been matched equally by unconditional love. Yin and yang babe. The depths of your pain and grief are the same as the depths of your love and joy. And those two people are the blazing light at the end of a mile-long tunnel on my worst days.
I don’t know if this is my foray back into posting, or just a glimpse into what’s been going on, but something’s telling me it’s time to get it off my chest. While the pain in my fingers and arms has often prevented me from physically sharing my story, my mind has been the biggest challenge.
And the biggest help? I’ve started writing. I’m getting it all down on paper, or let’s be real — in google docs. “Memoir” sounds so incredibly pretentious to me, so maybe let’s call it a collection of stories. A step to process and move through. To alchemize the pain. To give it purpose. Maybe I’ll share more about that soon.
For now, I’m ready to drop the shame of living with a chronic illness. The shame of a best friend choosing their way out of my life. Of a father’s withholding. The shame of still grieving a cat nearly three years gone… just all of it. All the anger it’s caused and the body that has paid the price. I’m calling back my power from all the places I left it, willingly and unwillingly. I’m a different person than I was — 65 pounds lighter physically and a thousand pounds lighter emotionally.
If you’ve made it this far, from the bottom of my heart, thank you for sticking around. It would be lovely to re-meet you as we are now — in the comments or in real life. Your presence means more than I can put into words, and especially to the little girl inside of me who still longs to feel kept.
All my love. Dana Kae. XO.
