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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.

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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?

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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