Guest post by India-Rose Channon
I’m a writer with a currently undiagnosed chronic illness. I’ve been fighting doctors for two years now to be believed, all while my mum has the exact same illness with a diagnosis. Because we’re women, and they consider this illness to usually only show up in men (which isn’t actually true, it turns out), they don’t believe I have it. This is my story…
For the fifth time, the MRI comes back with no signs of inflammation. No patches on my black and white spine to explain away the pain I’m in. Doctor McCarthy* delivers the news with his hands folded and the tiniest lines on his forehead, the ones that read I’m not sure whether I believe you or not.
It’s late. My appointment was at half four, but I was sent for blood tests, ultrasounds, scans – anything that might prove I’m in pain, that I am actually unwell. I know I’m unwell because sometimes in the morning my arms feel like they’ve been opened up and filled with antifreeze overnight. I know I’m unwell because I barely attended any of my second semester classes, afraid of getting stuck at uni, in too much pain to make it home. I know I’m unwell because there are days when sleep is the only thing I can do without hurting. If they can’t believe it, though, they can’t give me the medicine that will help.
After the last blood test, I hobble down to the hospital lobby. My mum is with me; we take the elevator because stairs aren’t much of an option right now. She nods at the hospital Costa across the room and says, “Dinner?”
We talk about my dad, and we talk about how good the veggie sausage in the toastie is, and whether mushrooms are disgustingly slimy or delicious, and we talk about my plans for after uni. As though I can possibly plan after uni. I can barely plan for the next meal. We talk the most over food, even when we’re not talking about what we should be talking about. For as long as it takes to eat a toastie, we’re in a normal Costa, not a hospital one, and my blood isn’t sitting in some room above our heads, waiting to be tested. I’m not crazy.
I have a chronic illness. I share my symptoms with my mum, who only started noticing them in her forties. Unluckily for me, I was 22 when the pain started to creep into my joints like frost. I imagine my limbs like pipes in winter, the water inside frozen and straining at the metal walls of the pipes. My joints swell, except the doctors can’t ever see it.
My mum has ankylosing spondylitis. It sounds like a spell, but the truth of it isn’t quite so magical. It’s a form of arthritis, inflammation of the joints. Sometimes, it can cause your spine to fuse. Thankfully, my mum doesn’t have this form of the illness, though this is a double-edged sword. Without the spinal fusing, it can be very hard to prove that you’re actually in pain.
It takes ten years, on average, for a woman to be diagnosed with what my mum has. Statistics like this are thrown around by women – cautionary tales of constant tests and buried pain. The truth, spelled out in confusing papers that have only just been written, is that the medical profession doesn’t know much about how women experience these diseases. Because they haven’t looked. The base line is men. Men show inflammation on scans. Women who have this often don’t. My mum never did before they diagnosed her.
I have a family history of this illness. My mum has it. My grandma has it. I have the gene for it. Except, when I tell doctors this, they raise their eyebrows. “It’s more common in men,” they say, and, “It’s probably just because you have bad posture. Stop typing on your laptop so much, then your hands will stop feeling like your fingers are trying to detach themselves joint by joint.”
Without the doctors, I have to figure things out myself. I visit Facebook pages for chronic illness like I’m visiting the local witch, asking for a cure the modern doctors won’t give me. I take turmeric like it’s a charm, my mum cuts out gluten and hangs a wreath from our door, we buy salts for the bath and oils for our skin. When I rub cream into my finger joints, I imagine I’m imbuing them with magic. I force leafy greens down my throat and hope they etch spells on my insides. Before we go to appointments, I say cantrips in my head. They will find something. They will believe me. They will see my pain.
We don’t want for food, but in my bedroom, with my back curved into an angry bracket, the kitchen seems very far away. To get to the food that will let me safely take my meds, I have to first get out of bed. The stairs are the worst of it, steep and curved and badly lit. There’s a door at the bottom that sticks every time; you have to knock it with your hip or your foot to open it. I have to sit on the bottom of the steps and weakly kick it until it opens.
So, breakfast is sometimes not worth it. I lay in bed and try to sleep instead, hoping that’ll work as well as the meds. Of course, it doesn’t. Because the meds are the best the GP can do for me, but they’re still barely touching the pain. The real meds, the ones I really need, are hoarded by the hospital.
The first rheumatologist we saw didn’t even look at me. He looked at my mum and my grandma, and all his questions were directed at them. He asked my mum what tests she’d had before she’d been diagnosed. She told him scans and blood tests.
He told her they don’t use blood tests to find AS. This is, to put it politely, utter bullshit.
After the appointment, she reminded me that I am strong, that she won’t stop putting on armour for every visit we take to the hospital. She has vanquished plenty of dragons in white coats who tell me I’m not in pain. That the aches in my back and my fingers and my jaw are not real.
You start to doubt yourself, after a while. You start to wonder if the pain you’re feeling is in your head, like the doctors all say.
The old knowledge was that generally it was only men who could get AS. This is far from the truth, but the doctors have yet to catch up. My mum and I sit in the car on the way to appointments and discuss why exactly there’s so little research into how this illness presents in women’s bodies. On the way back from the appointments, I cry, and we try to figure out what shape my future can possibly have.
Yesterday, I had a scan of my hands, to search again for inflammation. My last chance before I was told to wait a year. See if I get worse. Hope I get worse. I lay in bed and pray for my body to fail just a little bit more, so the doctors will believe me. I make wishes on my shaking fingers for proof of my pain.