Let me introduce myself. My name is Ben, I am a thirty five year old male living in the west of Ireland. I was raised in Nottingham smack bang in the middle of England. I was first diagnosed with Ankylosing Spondylitis in 2006 at the age of 28 but my experience with the condition goes back more than a dozen years before that.
The first clue that anything was amiss was a sharp pain down my left leg at age fifteen. I was very much into sport at this age and I was not too worried; I actually had a sense of pride over what I thought was an injury that made me a “real sportsman”. The pain was there in the morning but exercise cleared it up. This focus on activity for pain relief set a precedent that I am grateful for to this day.
As time progressed the sciatic pain progressed from being intermittent to a near daily occurrence. It began to affect my confidence not to mention my sleep. I remember driving in the hospital only to be told there was nothing to be done and being sent on my not so merry way. This was to become a recurring theme as hospital appointments and MRI scans could never pinpoint anything. This pushed mental wellbeing on to a downward spiral. Was I mad? I forced the pain to the back of my mind in a Herculean effort of will power and carried on with my life as best I could.
At age nineteen I left my unfulfilling apprenticeship as a mechanical engineer and began working with my Father as a plasterer’s labourer. Ironically this alleviated the condition at first. The constant climbing of ladders and loading scaffold developed my young body and I believe that this conditioning aided my successful response to treatment and embedded in me the importance of exercise. It did, however, have the negative consequence of making the disease and delaying further seeking of treatment.
Unknown to me the condition was worsening. The sciatic pain had mercifully eased off and now the disease began to present itself as a painful but less intense back pain. I put this down to the ravages of continual manual lifting and carried on with best of British stoicism, regardless.
In 1998 I moved to Ireland. In the context of the disease this was to prove a very lucky move. I took advantage of the building boom continuing with the heavy lifting that my body had grown used to. I continued to put the worsening pain down to my increasing work load and at some point, I can’t remember exactly, discovered what was to be my elixir; Codeine based medication. This continued for a few more years but the over the counter medication eventually lost its effect.
Ultimately it became impossible for me to work, socialise or even think effectively. The pain had become my totality affecting every part of my body even my digestion evidenced by dramatic weight loss. I could not bend down to lift the lightest of items and my balance was seriously affected by my lack of mobility. The disease was no longer “hidden”. It was obvious to colleagues and family that something was wrong. I was very depressed and had been drinking frequently to mask the pain, mental and physical, to little effect.
By this time I was convinced I was in the last stages of cancer. Regardless of my diagnosis I couldn’t exist much longer in this state. Why it took so many years to convince a doctor that I was ill with a real condition I will never understand. Maybe my choice of employment had deceived them as it had me. This time it was to be different. At this stage my bottom five vertebrae had fused together; bone taking the place of disc. The GP had no problem spotting the symptoms this time.
Within a week I was being examined by a specialist who was quick to put a name on my suffering. That weekend I celebrated the fact that I was not yet at deaths door and I wasn’t, in fact, mad. Within a month I had started on Humira. Anklylosing Spondylitis responds very well to the biological immunosuppressant’s. Unfortunately for sufferers in the UK it was not yet registered for treatment of this condition. People often condemn the Irish health system but for some it could be worse.
In the same way that history is portioned BC/AD I can partition my life before diagnosis and after diagnosis. To be free from pain was better than winning the lottery. I am making up for lost time a stronger person for my experience. It has been anything but plain sailing but I hope mythis will be a source of inspiration for any young person suffering from this or any other arthritis-related condition.