I was diagnosed with ankylosing spondylitis just over 2 years ago. As soon as I was told by my doctors about it and heard the word ‘fuse’, it really got to me.
Fuse? The first thing I thought that was the film ‘The Mummy’ – I’m going to become mummified alive! However, 2 years on from my diagnosis I can safely say being wrapped up in toilet roll and walking like a mummified Egyptian will be saved for fancy dress parties only.
I am a true a believer in optimism and I have been able to see two advantages with having such an early diagnosis: I feel lucky to have been diagnosed before any fusion and there is now a huge variety of medication and I feel it’s very likely anyone can find one which suits their needs.
At the end of the day the symptoms have been a real pain in the a*s… literally, and it is important to ease that pain. Biologic medication has been life changing for me and I am extremely grateful to be able to take it.
I’ve recently started realising how precious life is. Yes, AS is a nasty disease however, it’s now a part of me which I’ve grown to embrace. I feel lucky to have been diagnosed with a disease that is manageable, it could be a lot worse…
Being young with AS is exceptionally difficult. Most young people live without a second thought about their health. That can make it difficult for some people to understand what I’m going through. What matters for me is having friends and family who support me and understand that I may have bad days as well as good.
NASS has also helped me to look at AS in a different way, and has made accepting my diagnosis a lot easier. It’s taken me a long time to accept that it’s OK to say ‘No’ if I’m not feeling up for going on a night out or seeing friends because I’m experiencing a flare up or feeling fatigued. The three big things I’ve learnt are:
- Not to be pressured into doing things when I’m not up for it.
- Not to feel embarrassed about having a long term medication condition.
- Not to try and hide my AS from others.
So, I have put down that toilet roll, and saved the fancy dress for Halloween!
I truly hope many of you can gain something positive from suffering with AS. Open your eyes, embrace every day and live life to the fullest. Cliché? Damn right it is but trust me, if you keep telling yourself stuff like that it eventually sticks. Go ahead and give it a try. Let your AS empower you.
Monika is 21 years old and student paramedic. She recently became a NASS Trustee. She’s always been fascinated by medicine and deeply passionate about sports, attending university for two years studying Sports Science before embarking on her professional journey to become a paramedic.