Malise

I was diagnosed with Ankylosing Spondylitis in 2019. I was 21 at the time; I was lucky to have a quick diagnosis of 6 months but that was because I was persistent in finding out what was wrong after some many doctors just told me ‘I was overworking myself’.

The past 3+ years have not been easy; I have gone from having no health conditions to having an abundance of them. At one point in time, I was on 18 meds a day. I’ve been on opioids, I’ve done physiotherapy, I’ve had side effects to medication, I’ve had more X-rays and MRIs than I can count, I’ve had uveitis, I’ve had costochondritis, I’ve had surgeries, I’ve worn back braces; it’s been exhausting.

You become a ‘medical mess’; that’s how I describe myself whenever anyone asks me to explain my medical status and it’s debilitating. You start to hate yourself and your body and just want too desperately find a way to make it better, but sadly there isn’t.

It’s an ‘invisible illness’, people don’t believe you when you say you’re struggling to get out of bed and walk, people don’t believe you when you must cancel plans because of pain or just pure exhaustion.
That’s the saddest realisation, there’s no cure; there’s only management. You never know when you’ll have a flare up, you’ll never get better, you’ll never be healthy again.

Although there is so much sadness that comes with this condition, there are rays of light.
You become your own advocate and you really know your worth. I have never and will never let anyone speak badly about my illness. You gain an understanding of how important every opportunity is and how you must not let an illness define you. You learn to celebrate the little things, I never once thought I would get excited over lessening my medication or when you wake up one day with minimal pain. But you do, you learn to value life on a whole new level.
With this illness I have really learnt how to love myself, illness and all.
You also meet an amazing community to help you through the hard times and to be there during the good times.

I’m still not better and I never will be and I’m okay with that. I just want to let you know that it’s okay that it’s hard and it’s okay that you’re scared and worried and upset and angry. I don’t think those are emotions I’m ever going to stop feeling. My heart goes out to you all and know I have immense love for the AS community and the people that support us. You’ll always be strong to me and I’ll always support you.

It’s hard and I understand that, but remember that AS isn’t who you are, it’s just a part of who you are.

Queensland, Australia


One Response to “Malise”

  1. Dear Malise,
    Thank you so much for sharing your story with us. Had I read your story when I was first struggling there is no telling how much better my life would have been.
    Sincerely
    An old medical mess,
    Cookie

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