Why I Am Thankful for My Ankylosing Spondylitis Diagnosis


Intrinsically I think I’ve always felt that I was heading towards some type of calamity. Perhaps it was my difficult childhood, incorrectly diagnosed scoliosis, undiagnosed attention-deficit hyperactivity disorder, anxiety, depression or possibly, and most likely the most accurate, my deeply pessimistic nature.

The emotional and mental scars from childhood carried through to adulthood, with me fighting it all the way. I was so determined to be different to what I knew, to be a success as a person, to achieve happiness, the love of a good man and a beautiful family.

Happily all these things became my reality, my world and my focus, and for a long time I was extremely happy and content with my life. However, one should always be conscious of those nasty shadows, which were never resolved and therefore never dissipated and which one tries to keep hidden. They slowly started seeping into my daily life, and nothing I did could stop the eventual onslaught and desperate collapse which followed. We both had our own issues and blame within the marriage, and instead of working through them together, our distance grew and what was once a deep love was no longer enough to prevent the eventual collapse of our marriage. I had held on so tight, for my children, my husband, my best friend for over 20 years, but it was too late. In the knowledge that this wasn’t the way I wanted to live, I decided to walk away.

Ankylosing spondylitis (AS) was diagnosed one month before my divorce was finalized. With the diagnosis came the harsh truth about what I was facing. I would be living alone for the first time in my life. My eldest child was at university and my youngest was in her final year of school, and she would only be with me every second week.

I was so overwhelmed at what I felt was essentially the loss of my dreams, my love, my life. I blamed myself for all the problems experienced and couldn’t help feeling that my negativity had played a major role in the development of this disease, not yet truly understanding AS. I was terrified of this new path, fearful of every eventuality I could imagine. I couldn’t reconcile this broken person, who looked perfectly fine, but who lived in physical pain every day. Who couldn’t sleep because of the pain, who so desperately loved and missed her best friend, with the person I had so hoped to become.

I am so thankful for my AS because after swimming in misery for months, I slowly started to move out of the bewildered state I was in and started accepting that this was my reality. I understood that I could either accept the end of my marriage, accept the love still offered, accept the life that was still in front of me or I could wither away into the miserable, lonely, disabled person I imagined I was likely to become. Or I could take action against it and start living my life as mindfully and joyfully as possible.

I started seeing a personal trainer three times a week thereby gaining a modicum of control over my pain. I realized that the tons of medication I was prescribed were not easing my pain, and in fact, a number of them were contributing to my exhaustion, so I decided to exclude these from my daily life. Slowly my focus shifted away from the “poor me” attitude into a more positive, open one.

I will forever be grateful for the diagnosis, for without it I am not sure exactly who or what I would have become. I have found peace with the loss of the love of a good man. I have a loving and close relationship with both my beautiful children. I have created a welcoming, comforting home, where I can truly be myself.

I have learnt that to deal with this illness one has to be immensely strong both mentally and physically. I have had to learn that in order to deal with this life-long disease I have to forgive the past, forgive myself, learn to love myself, and by doing so I can nurture, honor and care for this beautiful, hurting body, which has borne me my amazing children.

There are days where I wish I never have to move again, never have to pretend that I am fine, never have to have people say to me “but you don’t look sick,” never have to try explain why I am so tired.

It is a choice really as to whether I allow those days to define me, or whether I live side by side with this disease, all the while claiming back the promise of a good and worthy life. One which holds the promise of brighter, albeit different, future to the one that I had imagined for myself.

And so, in claiming back my life, I say with compassion for my aching body and broken heart, “I know you, ankylosing spondylitis, and I thank you for making me love myself enough to fight you with every fibre of my being!!”

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