Sometime a Late Diagnosis can be a Blessing in Disguise
My formal diagnosis of AS was made by a Rheumatologist when I was 44 years old. It was subsequently confirmed at the Bath Hospital for Rheumatic Diseases, but even now there is a part of me that is in denial. Initially I couldn’t get past thinking ‘I’ve got Ankylosing Spondylitis’ over and over again.
I am now 58, and by outward appearance there is nothing wrong with me – I am just lucky that my case is relatively mild.
My persistent back ache during my teens was just put down to ‘Growing Pains.’
At 21 I was administering antibiotic ointment to cattle infected with ‘New Forest Eye’ (Moraxella Bovis.) My finger slipped into one of the calves eyes, and shortly afterwards I realised I was rubbing my own eye with the same finger. Undoubtedly this was what triggered my first bout of iritis and I have probably had 30-40 bouts since roughly alternating between eyes, but never both at the same time.
I was sent for X-rays of my hips, no one told me why, and I thought they had made a mistake.
If I had been diagnosed with AS at that time, there is no way that I would have gone on to have a long career in the Police both in the UK and in Hong Kong – I would have never got past the medical. That is the possible Blessing in Disguise!
On a ‘Living with AS’ residential course at Bath I learned that people with AS are exceptional and can be defined by having a special kind of inner grit and determination.
My symptoms are mainly stiffness of the spine (now mostly pain free,) together with ongoing chronic pain in my shoulders, hips and knees. For several years I took Meloxicam which was effective at pain control, but kept me up all night going to the toilet! I can also get very tired.
I am HLA B27 positive and my blood group is A Rhesus negative. Some sources on the internet suggest there may be a link. Other sources suggest that people with this blood type are descended from Aliens, or from Jesus Christ, or indeed from both. – You can’t believe everything you read!
So – what have I learned?
It is good to have a diagnosis – even if you are partly in denial.
The National Ankylosing Society NASS in the UK is also good.
To paraphrase Desiderata – Count your Blessings, and be kind to yourself.
England, United Kingdom