The Long Path to Diagnosis
Last updated: September 2021
I read recently that the longer it takes to get a diagnosis for AS the bleaker the long-term outcome for the sufferer. Teresa and I have talked a lot about how long I had AS before it was diagnosed. She thinks I might have had it as early as my late 20s. If that is true, then my diagnosis would have taken about ten years.
I thought I was invincible
Looking back, I can remember having all sorts of issues with my neck and shoulders to begin with. But I’d worked in care homes as a young man and, believe it or not, you must be a strong as an ox if you work in one of those places. I lost count of the number of times I picked an elderly person up off the floor. The tiny little ladies weren’t too much of a problem, but the bigger people, some of them extremely big, still had to be lifted. And a lot of the time the lifting was done alone. But, of course, back then, I thought I was invincible. And I prided myself in being a strapping young man who could lift anything if he had too. My technique was non-existent too. No keeping the back straight or bending from the knees. And, of course, I developed back problems over time. But I quickly decided back problems were an occupational hazard and nobody’s problem but my own.
A few years later, I found I was having trouble moving my neck. I’d moved on from the care homes and found work on building sites, and so, when it came to physical pain, I came to the same conclusion. Builders have bad backs. Therefore, just another occupational hazard.
Eventually, I went to see my GP. He was a nice bloke. But I know now that AS isn’t easy to diagnose. Which is why he didn’t. He moved my head about a bit, watched me wince each time he did, and then he said, it’s whiplash.
"Like in a car crash?" I said.
"Yes," he said. "Have you been in a car crash, recently?"
"No," I said. "I haven’t."
He looked at me as if I were lying. "You must have," he said.
I remember thinking, I’m pretty sure I’d remember being in a car crash, mate. But I didn’t say that. I said, okay doc, thank you. And off I went.
It’s amazing how the things we learn in our youth can hold fast even into adulthood, isn’t it? All my life I’d been taught doctors know best. I grew up on a council estate where a doctor’s visit was only slightly less important than a visit from the Queen of England. I’m pretty sure if my Mum had, had the time she would have notified the Thanet Gazette and arranged for a housewives’ guard of honour, complete with raised rolling pins and an old fella playing on a pennywhistle, to pipe the doctor in through the front door.
Once Mum had plucked up the courage to pop over to the phone box opposite to ring and ask if a doctor might visit her dying son, she would set about cleaning the house. Floors would be swept. Rugs would be shaken out; dusters would be flourished. And soon the sickly-sweet, cloying smell of air freshener would fill every room.
Next up, me. My bed sheets would be changed. I’d be given a bowl of water, a flannel, some soap, and a smudge of toothpaste on a damp toothbrush. I’d be ordered out of one pair of clean pyjamas and into another, cleaner, pair. I would assume the position as per instructions: my hair neatly combed and parted, my freshly scrubbed hands clasped in front of me as if in prayer.
"Now," Mum would say. "Stay like that until the doctor arrives. And no smiling when he comes in, I don’t want him thinking you’re not ill."
Our doctor was called Doctor Taylor. I can see his face clear as day, even after all these years. He was just the kindest bloke. But you can see why I’ve grown into the sort of adult that believes doctors are Gods. Which is why, when the doctor said it was whiplash, I kept my mouth shut.
Pains grow worse
Time passed and the pains in my neck grew worse. I started taking anti-inflammatories and painkillers. It was then that I noticed how the anti-inflammatories seemed to work better than the painkillers, I just wasn’t sure why. And I didn’t care much, just as long as the pain was numbed enough for me to keep working. There was a time when I was popping pills like they were going out of fashion. I’d work long, hard days, often out in all weathers, then come home and near collapse with the pain.
I remember, late one night, after a particularly tough day at work, I paused at the bottom of the stairs in order to prepare myself for the difficult journey up to bed. I remember how Teresa had gone up ahead of me minutes before. By the time she walked back along the landing having changed out of her clothes, washed her face, brushed her hair and teeth, and walked back along the hallway, I was arriving at the top of the stairs, having crawled up on my hands and knees. I remember wondering what on earth was happening to me. I fell into bed and tried to sleep, but every time I turned over, I was woken up with the pain of moving. As the days wore on, I got weaker and weaker. Fatigue set in. I struggled to keep up at work and couldn’t stay focused.
A couple of months later I fell off a scaffold. Fortunately, I didn’t do any lasting damage. But I was in a good deal of pain and so I came home early and lay on the couch and thought about what might happen to us all if I could no longer work.
Consulting another doctor
Another doctor – a man who became a lifelong friend – suggested I have physical therapy. Which I did. I remember how kind the physio was. But she kept urging me to relax. Kept saying, you are so rigid. You are too tense. Try to relax. And I kept saying, but I am relaxed. This is me, being relaxed.
After three difficult sessions she said, I’m not going to treat you anymore. There’s something very wrong here. She said she was attending a physical therapist's convention that weekend. She hoped to discuss my situation with more experienced colleagues. And it was she, the physical therapist, who, when we next met up, suggested I might have an arthritic condition called ankylosing spondylitis.
I don’t know if my quality of life is as bad or better than anyone else’s. You learn to live with what you have, don’t you? It’s all very personal, and very specific to us as individuals. And I don’t know if taking ten years to get a diagnosis means my life will be more difficult or even cut short. But there’s nothing I can do about that and so I’m not going to dwell on it. I do my best to stay positive. I move when I can and I rest when I can’t. I take it day by day. I try to laugh and smile and be good company to my colleagues, family and friends. What else is there for me to do other than keep at it for as long as I can.
Do you notice worsening flares in colder weather?