A.S. Face 1844: Claire

Face 1844

I grew up in a small northern town in Yorkshire England, the youngest of 7. My mum was a bipolar alcoholic and codeine addict, our lives revolved around whatever she was doing with her manic phases or depressive moods and trying to survive the day unnoticed and peaceful.
I remember having knee pain and psoriasis as a teenager but the doctor told me it was growing pains and i figured my skin issue was from stress and nerves of life at home.

I didnt complain or discuss any of my pains or issues with anybody, non of us did, we had other problems to worry about without complaining about aches and pains and if we did we would be told to stop moaning or stop being soft anyway.

From the age of 18 i worked as a care aide in various care homes so when my back pain began, it was blamed on work and posture or bad manual handling technigues.
I also suffered from regular UTIs and kidney infections but the psoriasis had gone by then.
I tried physio but the therapist also blamed posture and work and said i also walked too heavy, whatever that meant.
At 20 i met my husband and from then on i wasnt alone he became my best friend.
In my 30s we had 2 wonderful boys and we moved to Canada for a better life for us all and the back pain was just something i had gotten used to living with.
When i was 35 my back pain was becoming worse and i went to my doctor again and again, he tried me on a vast number of different painkillers and then narcotics but i couldnt take them as i had to work and they made me feel drunk, i tried physio again who told me again it was the way i walked !so then the dr suggested i was depressed and give me antidepressents! I carried on like this for a few years before finally he sent me for a CT, when i went back for the results i saw a different Dr who was covering while mine was on vacation, she looked at the results and suggested it was Ankylosing spondylitis and sent me for an MRI.
When i went for the results of that i had to see a different Dr yet again who asked why i had gone for an MRI and i told her the last one had suspected AS, she looked at me in the eye and said firmly,  “you did not need an MRI, you do not have AS and neither do you WANT it, there is nothing wrong with you it is your line of work “.
This made me feel small like she was accusing me of being a hypochondriac and i was wasting her time, i felt so bad that i did not go back for 2 years. When i did go back i had changed doctors and now had the same Dr that had sent me for the MRI in the first place , at my first visit she said that this had all gone on long enough time for a referral to a rheumatologist and by the time my appt came through i was 41.
The rheumatologist looked at my old CT and told me that the results showed bilateral sacroilitis with degeneration and disc bulges! It was a no brainer i was diagnosed with AS straight away from my assessment of other symptoms.
I cant believe i had gone years thinking i had been wasting peoples time!!
The rheumy imediately started me on Humira and within 2 weeks i was no longer being woken up with pain and i was sleeping! Now im relieved that i have an answer to my pain and that my pain is significantly reduced. I still have flare ups but they dont last as long.
My husband and i are both Scouters our boys are Venture scouts and we are often hiking and canoeing i just know my limits.
This year i also hiked across Spain on the Camino trail 305 Km.
I still have daily pain but its reduced and im not afraid to go to the Drs because when i do she asks me how my pain is and this is the greatest feeling, that somebody cares.
British Columbia, Canada

One Response to “A.S. Face 1844: Claire”

  1. Dear Claire,
    Thank you so much for sharing your story with us.
    Sincerely Cookie

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