• Faye M

Diagnosis Denial - Beware!

Can you really be in denial about your diagnosis?


I was diagnosed with AS (Ankylosing Spondylitis) aged 24. If I am honest it was a real inconvenience. I was, what I thought coming up to the peak of my life, my health, young, free and starting my career as a Physiotherapist. My onset of pain was like a strike of lightening. After a trip to the doctors to ask for some pain relief, the smart young locum GP was not convinced by my efforts to play down the situation. He ordered an MRI and a series of blood tests. Much to my annoyance this lead to even more tests. I didn't have time for this, I had life to be getting on with!


By the time all the results were collected my pain had significantly reduced and I was getting on with life with some grumbles of pain here and there, but on a whole I was okay, or so I convinced myself.


HLaB27 positive

Severe active sacroiliac inflammation

Bony erosions.


WTF?!!


Cue denial. Convinced they had mixed up my results, I reluctantly attended my first Rhuematology appointment. I sat in a waiting room with people at least double my age and then some, wondering when they were going to admit their mistake. A terrible Dr did his worst to impress me, by telling me 'You have AS, don't worry you will die of something else'. Cue more denial.


Years passed, flare up after flare up. On the good days I was happy, I was right they had got it all wrong. Then wham!! A flare up would come and stop me in my tracks literally. This took its toll on my mental health and my general outlook on life was negative, such uncertainty will do that to you. As I am sure those of you reading this who can recall their diagnosis it can be one of the most angering times of your life. Having said that, Life went on, I lived my life as I had before the diagnosis, just with more anger and negativity then before. I never told anyone about my illness, as at this stage I wasn't convinced myself.


I can recall attempting to hide my limp, hide my pain, hide my devastation at the situation. I would come home from working a 60 hour week and cry, so angry with my body. Why would it just not work like it used to? Life went on, in a fashion.


During my pregnancy with my daughter I had 9 months of bliss, no flare ups I was in remission. Then 3 months after a shocking birth with associated complications by body set about the most horrific and convincing flare. I would crawl or hop to my daughter cot in the middle of the night, crying as I fed her. How was I going to look after her when I was so broken myself? when something challenges your motherhood like that it is absolutely devastating.


It is normal when in the middle of a huge flare to be blinded by the fire, it can be impossible to see an end.


The flare lasted 6 months.


I continued to try keep control of my life and the situation by going back to work when my daughter was 3 months old I would panic on the train to work, how could I make the 3 minute walk to the office without my leg collapsing in pain?


I cried a lot, but I survived.


Then, I did what my body wanted so much for me to do..... I stopped and I listened.


Sometimes your body has to throw some real nasty stuff your way in order to make you listen up! Mine threatened my life, literally! It was then I started to accept responsibility for my own health. My body needed help, So I started to give it just that.


An incredible thing happened once I accepted the situation I was in and the illness I was living with, the pain reduced. So forgive me for denying my body the help it needed for all those years, I was just hoping for a better diagnosis.


Find Your Strength


Faye M

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