It hasn’t been all bad. It could have been far worse. I could have had a severely traumatising diagnosis which saw me with a mere few months or days to live. It hasn’t been like that at all. But it sucks nonetheless.
I was 20 when I first discovered that I had a back problem. It started with me walking to the train station after a long day at my desk job and discovering that my back pain was so acute that I couldn’t properly lift my knees and walk like…well like a human being. Albeit over a decade ago, I still remember the strange and unusual method I adopted of shuffling my feet one at a time along the ground, in order to make what felt like a gruelling trek to the station.
From there it went downhill. There were numerous calls to the doctor and even a late night call to A&E. Embarrassingly, the pain was so sharp I had to phone my parents (who were only across the landing) for help. They called for an ambulance and by the time the paramedics arrived, the pain had subsided. Awkward. I felt like a fraud. I was taken in for checks and sent home with some co-codamol and told, as I would discover would be the medics go-to phrase, that it was just ‘back pain’.
My GP at the time was no use. Unfriendly, uncomfortable and for want of a better word unsympathetic. It didn’t seem to strike him as odd that a girl in her early 20’s was suffering as bad as I was. So, it went on for ten years until I had enough. The pain although not consistent for ten years was indeed chronic. I was feeling worn down by the constant changes in how I felt each day. It was draining. I called the GP again, this time speaking to a new doctor. I was all pumped up and told him how ready I was to investigate private health care. He insisted that there was more that could be done on the NHS first. I was referred to a physiotherapist who seemed unsure why I had been referred to her at all. Within five minutes she had confirmed that I who I really needed to see was a Rheumatologist. This is where the fun began.
I was sent for an MRI and had a Rheumatology appointment which confirmed that I had Ankylosing Spondilitis – a type of arthritis that affects the spine. It was a relief. Ironically. I was simply happy to have a name for it. Little did I know that it would be just the start of more names to come.