What's your AxSpA/AS Story?

My third anniversary of my diagnosis is coming up, and it's crazy to think how fast the time has gone and how much things have changed along the way.


When I was first diagnosed I was completely unable to walk and stuck in hospital in China where I was working. I had to drag myself on a plane back to the UK to receive treatment and had to wait a few months before I could get my hands on biologics.


However after I started my Enbrel injections I started seeing a lot of improvements, but it still took me around 8 months before I was back on my feet walking by myself again.


It's hard to say just how much my life as changed as I recovered just in time for the pandemic. So I have been housebound pretty much the whole time since, which I may have been if it wasn't for the AS too. I feel like when things start getting back to normal I will be able to see just how different it was to things before. Although I suppose if I wasn't so clinically vulnerable I would probably feel more comfortable getting back outside and in the swing of normal life (whatever that is now)

I have been trying to get a diagnosis since I was in my mid 30's when I felt something was not right with me. In my mid 40's I had a severe flare of pain after a move to a new city and I sought out a rheumatologist. This is when my spondyloarthritis journey to diagnosis began - 7 years ago. I went from undiff AxSpA to nr-AxSpA, to AxSpA, with the addition of peripheral SpA and now AS with radiographic/imaging evidence.

My life has changed quite a bit. I have increased pain even though I am on biologics, DMARDs, and other meds. I do not work outside the home anymore and rarely plan to go out. My days are all different as I do not know how I will feel from day to day. I have okay days, but mostly bad days with relation to pain and fatigue. I have slowed down a lot and sleep much more. I have become more of a pj-wearing, animal-snuggling, movie-loving person, and I am okay with that.

I've had AS since 1999 but that was when it was diagnosed - I think it's probably more like 1989, maybe even earlier.

I have been living with AxSpA since 2015. However, I was not diagnosed until 2019. During those four years, I began experiencing worsening pain, discomfort, and fatigue. The onset of my AS was very gradual; so much so, that I did not actually go to the doctor about my pain until late 2017. Up until then, I had just thought that these were growing pains (as I was a teenager then). Even after my diagnosis, I did not realize how bad my AS was until early 2020 when I could no longer mask my illness and had to admit that it has a debilitating effect on my life.


Getting diagnosed was difficult but I am thankful for how quickly my AS was discovered. As I mentioned earlier, I did not go to a doctor about my pain until 2017. I went to my family doctor (general physician) first and was brushed off at first. But after a couple of months of seeing her again and again for the pain in my lower back and buttocks and fatigue, she finally ordered some x-rays for me. My x-rays revealed that I had some spondylolisthesis, so some movement in my vertebrates. After this I was referred to an orthopedic surgeon who said there was nothing really wrong with my back. After that, I was referred to my current rheumatologist in early 2019. After ordering some x-rays, MRIs, and blood work, he diagnosed me with AS in late 2019. I am so lucky to have been diagnosed by a rheumatologist so quickly as I know many people with the same condition have experienced much longer wait times.


Life has changed drastically for me. I have not been able to get a job. I had to change my undergraduate program from a four-year degree to a three-year degree (which is less useful for my field). I have lost friends and become distanced from extended family. I spend most of my time at home, either in bed or on the couch. Showering has become a tedious and tiring task. I cannot walk most days without a cane. I am almost never sitting anywhere without a heating pad. My life has become all about my AS (and other conditions) and it is so frustrating, but I am grateful to have found such a wonderful kinship in the chronic illness/disabled communities.