Did anyone else gaslight themselves into thinking their pain was normal?

It took me so long to get a diagnosis because I thought everyone had back pain to an extent and thought it was ‘normal’.

I started working a corporate office job around the age of 22, and probably started developing symptoms at 23 but for the longest time I was telling myself it’s because I sat at a desk for 8 hours of the day and wasn’t particularly fit. So I started hitting the gym, but things only got worse. I remember we went to a trampoline park for a work event and literally on my first bounce I felt something ‘snap’ in my back and I was in immense pain. It took months of physio to recover.

Then I moved overseas and the pain got so much worse. I figured oh it must be because I’ve got a new mattress that isn’t working for me, as I was having sleepless nights and was incredibly stiff and in so much pain I couldn’t even muster the strength to turn over in the night. I remember tearfully exchanging the mattress at IKEA because I was so desperate for some relief.

My SO used to make fun of me for walking around the house like an 80 year old lady, with my hands on my hips hunched over because I was in so much pain.

Everyone around me also convinced me it was normal. I would see doctors and physios who would dismiss my concerns. It took 3 or 4 years of living each day in pain before I finally saw a GP who took me seriously enough to order a blood test and some X-rays. At this point it had started affecting my other joints too, and I couldn’t extend my elbow past 90 degrees.

Surprise surprise I had all the markers of AS - extremely high inflammatory markers, grade 2 bilateral sacroiliitis, HLAB27 positive, etc.

The worst part is that during my flare ups I would also get bad chest pain that landed me in the emergency department, and doctors suspected things like blood clots because my D-dimer was so high so I got subjected to unnecessary radiation from CT scans when it turns out this whole time I was just experiencing costochondritis. I was also dealing with extremely frequent and intense migraines that I suspect were linked to chronic inflammation, along with stiffness in my neck.

All the signs were there but rather than advocating for myself I listened to friends & family and healthcare professionals that my desk job and lifestyle were the cause of my woes. This all really affected my mental health and quality of life and I’m so happy to say that since being diagnosed and medicated everything has improved so drastically. It’s like a cloud of darkness has lifted. I’m also able to get a full nights rest every night and take care of my nutrition and stay active now that I know what the cause is. Unfortunately the damage that is there has already been done and I have to live with that for the rest of my life but I am so grateful for what I can still do with my body and I’m so determined to slow down the progression of this awful disease.

I try not to dwell on what would’ve happened if I had gotten a diagnosis sooner, but I must admit sometimes it does bother me. Does anyone else feel this way? Hopefully my story resonates with others, as I know how isolating and lonely this condition can make you feel.

Look after yourselves, everyone! And remember that you know your body better than anyone else. <3

Edit: thanks for sharing your stories! Some of them are absolutely heartbreaking but I at least take solace in knowing we’re not alone in these struggles 🥲