The Shadow of Ankylosing Spondylitis
One of the hardest aspects of my diagnosis was breaking the news to my mother.
Having lived most of her adult life with ulcerative colitis, Mum knew firsthand the misery of chronic illness. It was the last thing she wanted her children to experience, and sadly my eldest sister had already been living with UC for many years.
Mum was no stranger to ankylosing spondylitis
In an odd coincidence, two of the three men she married throughout her life had AS. Even more bizarre; neither of these men were my father. I inherited the HLA-B27 gene from Mum.
Watching her first husband lose his ability to walk and then see must have been hard on a young bride. AS was not well managed back in the 1960s and in a short time Mum’s first husband was completely bedridden. She struggled to care for him, hold down a job and raise their young daughter, all while burdened by her own chronic illness.
Their marriage ultimately failed under the pressure and in time my mother met and married for a second time, to the man who would become my father. Her first husband passed away a few short years later.
My parents spent almost 20 years together before Dad developed cancer and died when I was 16. His death was hard on us all, but seven years later Mum found happiness again and married a third time.
My step-father, a doctor, had been diagnosed with AS many years previously
He had found medical treatment to be effective in managing his symptoms and believed the disease had eventually “burnt out” and no longer troubled him. His neck had been fused for years and he was no longer able to drive due to the limited range of head movement and resulting lack of peripheral vision.
Late one Friday afternoon our step-father was a passenger in a car which collided with another vehicle. He was killed instantly. As devastated as she was, Mum took comfort from knowing his neck fusion would have prevented her beloved husband from seeing the on-coming car before it slammed into them.
The dark shadow
With AS having woven its way through her life, it was a big shock to Mum when I told her the confirmed diagnosis that explained my years of back pain. Shock soon gave way to anger at this invisible illness that had, in her words, "followed her and her loved ones like a dark shadow."
When she came to understand our shared gene was responsible for both UC and AS, Mum was overcome with guilt. No matter how I reassured her this was not her fault, she mourned passing on this burden to me.
The only way I finally got her to see things differently was reminding her that I could well have given this gene, and potentially a future chronic illness, to my own children. I asked her if she would apply the same judgement to me she was applying to herself. She admitted she could never see me in that light and I think this helped her stop blaming herself to some degree.
Until the time of her death from brain cancer three years ago, Mum was my biggest supporter. She never stopped encouraging me to manage my health well, try new things and do everything possible to stay on top of this disease. Even when she was weeks away from death the first question she asked me every time I saw her was “How’s your health, Love?” Her bottomless well of mother-love never ran dry.
I now know at least one of my two daughters is positive for HLA-B27. I hope so deeply neither of them inherit AS or UC and I know I will struggle to resist that same sense of responsibility if they do.
Thankfully, I know there is much that can be done to actively manage chronic illness and improve our outcomes, and I will be here to provide them with all the support they need. I will also remind myself of how I never wanted my own mother to waste even a moment of guilt over the information we carry and pass on unwittingly in our DNA.
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