3 Years Of AS: Reflecting On My Journey So Far

This January marks the third anniversary of my AS diagnosis. However, I can’t tell you the exact date. The previous January, a close friend of mine passed away. Being the superstitious person I am, I couldn't shake the feeling that the changes in my body were some kind of sign that I was due to die on the same day as him. I refused to check the date until I knew it was February to avoid panicking over my impending doom.

Then one morning my Dad came into my room and said: 'it's officially February - your birthday month, do you want to do anything for it?' He was doing it to cheer me up after all I’d been through, but it gave me way more relief than he could have fathomed.

I began to think that maybe what I actually had was an arthritic condition (with a name I was yet to learn how to pronounce) and that it wasn’t the end of the road for me.

On a lighter note

Apologies for beginning this article with a pretty dark story; I promise the rest will be infinitely less depressing (I hope so at least). I've never told anyone this part of my story before as I quickly realized how ridiculous I was being. But I wanted to talk about just how far I have come in the first 3 years of my journey with AS and thought this was a good way of illustrating how low I was at the start.

State of mind

As you can tell from my bleak introduction, I was not in a good place mentally when I was diagnosed. My feelings of depression and anxiety were at an all time high. I was confused and in a lot of pain. I felt stuck in a state of suffering & self pity.

However, I found a way of channelling  these negative feelings into positive energy. I have already written an article about this technique so I won't repeat myself but you can click here to read about that if you so wish.

Nowadays, I'm in a great place mentally and have a much more positive outlook on my situation. I prioritize looking after my mental health as I know how it can affect my physical health.

I often see surprised looks on the faces of my able-bodied friends when I talk about my condition with such positivity. That being said, I am no stranger to receiving funny looks but it's nice that this time it is for a good reason!

Mobility

When AS arrived on the scene, the main problem was with my mobility. The 9 months I spent on crutches felt like an eternity and I wondered if this was going to be the situation forever.

Luckily, this was not the case. After starting on Enbrel and following a daily stretch routine, I was finally able to walk unassisted. Since then I have been able to rely solely on two legs to get by.

Of course I still have bad days, but I usually only need a few days in bed to recover, which is nothing compared to the 9 months of constant agony I experienced at the start.

Knowing my limits

Once I was finally crutch free again, I developed a terrible habit of overdoing things and my body would suffer for days as a result. I think I needed to blow off steam after spending so much time unable to do the things I loved. I figured that because my body could move by itself again, it was ready to live life in the fast lane. Trust me when I tell you that it absolutely was not.

One of the biggest lessons I have learned is to not feel guilty about resting or dropping out of plans that my body isn't ready for. I know it’s a cliché, but listening to your body is crucial. If you feel your body asking for some rest, then politely give in to it. It's better to miss out on one evening of fun than suffer days of pain afterwards. Plus who doesn't love a day in bed watching Netflix!

Being comfortable

At the beginning, I felt embarrassed about my condition. I was worried that I’d be judged by others so I avoided discussing it at all. As a result, my mental health took a bit of a hit. But after discovering an online community of people going through the same battle as me, I started opening up more. I saw that I had nothing to worry about & my friends and family didn't treat me any different.

Now I have no shame in admitting to other people that I have Ankylosing Spondylitis and realize that it doesn't define me as a person. Perhaps the most difficult part of that interaction now is teaching them how to pronounce it.

Reflections

I feel I have made huge progress over these 3 years and learned so many lessons along the way. I'm far from the finished article and still work on myself every day but I’m so pleased with how far I have come.

What I thought was the end of my life was actually the start of a new chapter. The story has certainly been a painful and tough one at times. Nevertheless, I have met some amazing characters going through the same struggles as me and found writing about my condition to be a wonderful new arc in my life.

Of course Ankylosing Spondylitis is a famously unpredictable condition and I have no idea what challenges it has for me in the future. This disease may progress, but so will my knowledge of how to deal with it. I am approaching the future optimistically and feel that whatever this condition throws at me, I am ready for. I'm not going to let it defeat me.

To anyone starting their journey

I want anyone out there who has recently been diagnosed to know that however you are feeling right now is not going to last forever. The further along this journey you go, the more you’ll understand your body & the more equipped you’ll be to deal with whatever comes your way.

Most importantly, don’t be afraid to reach out to others if you are struggling. You aren't alone in this battle and there is no need for you to suffer in silence. I would never have made all this progress without the help of others so don't be afraid to speak to someone - whether that is a friend, family member or fellow chronic illness warrior online. I guarantee it will be worth any awkwardness that you may feel initially.

What progress have you made on your AS journey so far?