Reflecting on Life When My AS Was Undiagnosed

As a lot of us do around new year, I was reflecting on 2023, which got me thinking about life now compared to before I was diagnosed.

I was diagnosed with ankylosing spondylitis in 2021, after my symptoms had steadily worsened since the beginning of 2020. Despite being diagnosed at the age of 25, I had a history of years of back pain, without ever finding the reason for it. Everyone in my life knew that I had a "bad back," and it had become normal to me.

When I was finally diagnosed, I felt huge relief at finally understanding what was happening in my body and having a name for my pain. At the same time, it was daunting to find out that I have a progressive condition.

Without a doubt, life was harder before my diagnosis

I didn’t understand what was going on in my body, and neither did any doctor. This meant I didn’t have access to the medications, specialists, information, and support that I do now. I found it difficult to advocate for myself because I didn’t know what I needed.

Being undiagnosed also had a huge impact on my mental wellbeing. I didn’t know what was causing the pain, which gave me a lot of health anxiety. I would wake up most nights, stiff and in too much pain to get to sleep again. This only made my fatigue during the day worse.

I started to dread going to bed because of the pain I knew would come in the night. If I went out with friends, I found it exhausting and got flare ups. I found working so draining that a few times I came home and burst into tears from how tired I was.

Worrying about progression

After the relief I felt when I was diagnosed, I started to worry that all my symptoms would get gradually worse as my AS progressed. For me, the opposite has been true. I started biologics which have worked well to bring my symptoms under control. I can sleep through the night now. I have access to prescription painkillers when I need them or if I’m having a flare up. I have a rheumatologist I can contact if I’m worried or need help. My other doctors better understand how to help me, and I don’t worry as much about my symptoms being dismissed.

When I want to go to concerts or events, I can send medical proof and get access to seated areas. This means I go out more and I can enjoy myself and be comfortable. I no longer have constant anxiety about where the pain is from, and I feel confident advocating for myself in medical spaces.

I am not symptom free

Having AS can be really difficult, and it affects my day-to-day life. But having a diagnosis has improved my quality of life so much. For me, progressive has not meant that my quality of life progressively worsens.

So many of us with AS have a long journey to diagnosis and feel that we have to fight to be heard. People outside of the AS community may struggle to understand why people would want a diagnosis, but I know how important it is.

What has been your experience with diagnosis? If you have been diagnosed for a while, how does life now compare to life before diagnosis?