To be given a diagnosis was a relief.
“Are you certain?” I asked.
There can be no doubt. The fusing of your sacroiliac joints is clear to see. She continued to discuss treatment but I was suspended in that moment of certainty, of being believed. For two years, as pain wracked my body, so severe that I would lie screaming silently to myself with hot tears leaking from clenched eyes, specialists had told me they couldn’t find anything wrong. I had taught myself to brace for further disappointment, yet here was an answer. An autoimmune disease, a form of arthritis. Connective tissue hardening and fusing my joints together. Ankylosing Spondylitis. A word I’d always need to check the spelling of. But I was only 23. Now I had an answer I could resume living life.
Are you in pain now? My bikini waxer asked as she spread hot wax in my most intimate areas.
The answer was yes but the question wasn’t as daftly obvious as it appeared.
I am always in pain.
I could adopt a guise of normality at first: slamming back the pain killers at night to sleep, slamming back the double-shot espressos in the morning to rid myself of the druggy veil. But then the disease struck my most vulnerable spot. My body
Medications conspired with reduced activity to quickly dump thirty kilos onto my small frame. I was so enraged and humiliated by what my body had done to me: not only was it sabotaging me from within with fatigue and pain, now it was turning me into a grotesque joke. It was a traitor and I hated it.
Women are taught that investing in your body with exercise and diet are signs of self-love. We are taught that our sexual appeal decreases as our size increases. Here I was, flabby, soft, bloated and married to an athlete. We chose each other when my fat was appropriately placed and thus considered ‘curves’. How could I believe his claim to find me attractive? Compounding this was the ever present duo: pain and fatigue. He wanted to help. He saw my agony and felt helpless. He wanted to hold me but the pain wouldn’t allow even a gentle touch. Our roles melted from lovers and partners to patient and carer.
Life is measured in numbers
Who am I now, if my identity cannot rest on the certainty of success that these numbers gave me?
The next blow was to my social life. A day at work left me too exhausted for midweek plans and weekends became closely protected and utterly necessary recovery periods where I yielded to the fatigue and sleep. If an invitation was accepted, odds were I’d need to cancel at the last minute – body winning over mind. If I went, I’d pay for it with days of pain and tiredness.
I became so guilty. I missed so many things. And so few friends understood. I could look so well. They didn’t see the collapse that followed. Many, many friends drifted away. Those who didn’t, those who understood without being told, those who checked in with compassion, who never forgot me in my prison – those friends are my strength.
It feels like my spine is made of something rigid. Wood that I’m trying to coax – through stretches, through diet, through aggressive medications – into yielding and moving like the myriad bones in my back should. Around this wood I am tender, bruised, swollen. This is the pain that is my everyday – my normal – that makes me come across as though I’m always slightly pissed off about something.
Sometimes, the pain screams. A crescendo through my whole body, intensifying from dull ache to sickening shock. Pulse after pulse. A knife twists in my spine: cold, probing metal, finding bone, pushing further in, twisting.
I try to find reason when it’s like this. How did I bring this pain upon myself? Did I overdo it at work? Overdo it at play? Not exercise enough? Exercise too much? I won’t sleep. I won’t function. I sweep my diary clear as I brace myself for days of stubborn recuperation. I will pay for this ten times over.
My body is at war with itself. This is a truism of an auto-immune disease. But my body is also at war with my Self. I must resist starting each sentence with “I was”. I was a gymnast. I was a soccer player. I was thin. I was a pianist and a singer and a performer and a burst of energy and a friend and… I had ambition.
For three years I fought the reality that shoe-horning myself into the ‘normal’ professional environment was headed for disaster. I hated disappointing anyone – my colleagues, my bosses, my parents who were so proud of my academic and professional achievements. I was the type whose bedroom dripped with medals and trophies, whose life was propelled forwards by a singular drive to ‘do my very best’.
And here I was, starting each day with a plea that my body move (that’s step one) then begging the pain to recede. Then battling the constant fog of pain medication and heavy fatigue to do a job that relied on a quick and curious brain. I tried to keep going. Everyone tried to help me. But eventually, I just couldn’t be relied upon. With deep shame, I confronted my failure and my professional persona – so integral to my idea of who I was – collapsed.
I sit across from another version of myself. She looks cool and together, and her armour is cropped blazers and pearls and pencil skirts. This is it, she says. The dream, the pinnacle. And now you’re going to fuck it up because you can’t hack it? Do you know where I could go? Who I could be? What my life would be like? I am on the cusp of the world and you’re offering me a little life of brushing crumbs off my boobs.
Who am I without this job though? Without the clothes? Without the comfortable descriptors? How do I explain my availability, my free time? What do I write in occupation when ‘inert t-shirt covered in food stains’ is how you propose I occupy my time?
I wave my hands vaguely. Alternate Naomi, with the vision and ambition and capability, slips through my fingers.
Over the years, because of the implications of my disease and medications, doctors asked when I might want children. I would pluck the number 28 from my arse – to defer the question as much as anything. It sounded suitably old: an age by which I would have established life on its awesome, adventurous trajectory and be ready to create monuments to my awesomeness in tiny human form.
It started well:
Career at 21.
Married at 23.
Owned a home at 24.
Then the wolf came and blew it all down.
Amidst wreckage, however, we have the opportunity to rebuild.
At 29, I am breaking up with who I was.
Like most relationship breakups, this one is drawn-out. I’ve been sitting in the wreckage for some time, trying patience and compassion and listening, instead of fighting. With tearing effort, I remind myself that Past Naomi wasn’t perfect: she hadn’t found her empathy or sensuality, her confidence or creativity. She was smart, but she didn’t have wisdom. I like these things about Now Naomi.
I have stopped fighting against the monstrous waves that have battered my body and mind for eight years. I have stopped thinking that mimicking an idealised, created version of myself is proof I am doing ok. It is the opposite. I have said, ok enough. I can’t do it anymore. I don’t want to do it anymore. I cannot fight against my disease – against my Self – anymore. I know what I can’t do. Now I just have to nurture what I can do. For the first time in a long time, I’m growing again.
Image: Volkan Olmez
Naomi Barnbaum lives in Canberra and is a federal public servant by day, having joined the great suited migration from Queensland to Canberra eight years ago, BA (Hons) Arts (International Relations and History) tucked under her wing. She balances time in an office with a love of music (playing and spectating), writing, reading, intersectional feminism, travel, her two dogs and wonderful husband. She quarantines her written musings at www.naomibarnbaum.
Thanks, Naomi. This is helpful.
Years of endometriosis (another isidious auto-immune disease) and now, post-menopause, severe food intolerances, rob my energy. So I, too, organise to find energy for work, but only enough for work. People see my energy but not the price paid to muster it, the regime of restricted diet, supplements, rest and drugs that makes it possible.
This gives me food for thought. Thanks for putting words to this invisible struggle, which I mostly deny until it overwhelms. I’ll see my coach later today, let’s see what we can do with this awareness.
I send you a hug,
coaching change agents for effectiveness + joy
Such a beautiful and vulnerable piece. Inspiring and strong.
Thank you, Thank you for sharing. As a fellow spoonie, I know how many emotions must have gone into putting all of these thoughts down into one, articulate post. It reminds me of a book that a chronic pain specialist recommended to me called Breaking the Habit of Being Yourself by Dr. Joe Dispenza. Wondering if you have read it?