What I Wish Someone Told Me When I Was Diagnosed With AS

Being newly diagnosed with ankylosing spondylitis was probably the scariest and most confusing time of my life. A condition with a long and spooky-sounding name was thrust on me, and it made me panic.

I had never heard of this condition before, and the information I was given was completely inadequate. It took me a long time to fully understand and to come to terms with my new condition and how it was going to impact my life.

Lessons from being newly diagnosed with ankylosing spondylitis

At the start, I didn’t even know anyone who could pronounce "ankylosing spondylitis", let alone had enough knowledge of it to have a conversation about it. My rheumatology appointments were the only times I could speak to someone who understood my situation, but these were few and far between.

For the rest of the time, I used up my limited energy explaining to friends why I had limited energy! Most of the time, it fell on deaf ears. They would either struggle to understand what I was going through or give me unhelpful advice. I knew they meant well, but the advice was never useful.

My anxiety levels were through the roof, and I had no idea what I was getting into. So, for anyone out there in a similar place in their journey with ankylosing spondylitis, I’m sharing a few lessons I learned the hard way and wish I’d known at the start.

You are not alone

It might feel like you are alone in this battle right now, but that couldn’t be further from the truth. People from all over and from all walks of life are diagnosed with ankylosing spondylitis. This is incredibly unfortunate, but at the same time, it means that there will be other people out there just like you.

There are so many communities and groups online that you can join and find people supporting one another. If you look on any social media site, you will discover AS warriors sharing their stories and spreading positivity and awareness. You might not feel ready or comfortable to start posting and sharing your chronic illness journey online, but that doesn’t mean you can’t reach out and connect with others who are doing this.

In my experience, members of the chronic community have always welcomed fellow spoonies with open arms and are more than happy to chat about all things chronic. You can learn important coping strategies from these people, find mutual support, and build amazing friendships along the way.

If online groups are not your thing, some support groups in your area may allow you to attend in person.

Things will get better (and sometimes worse)

Remember that this is the start of your ankylosing spondylitis journey. How you are feeling right now will not last forever. I am not saying that it is going to be a straight and narrow path, because this is not the case. The further down this road you go, the better you will understand your body and will be better equipped to manage things.

You will find tricks that work well for you and help you manage your symptoms. You'll learn what triggers increase your pain and figure out ways to avoid these to the best of your ability. You know what the issue is now. This might seem scary, but it can actually be positive. Now, you can better focus your energy on managing things because you know exactly what you are up against.

Unfortunately, that doesn’t mean the bad days won’t return. But when they do, you will be better equipped to take them on and get the good times flowing again more quickly.

Keep searching for the right treatment plan

The first medications or treatments that you try when you're newly diagnosed with ankylosing spondylitis might not work out for you, and that’s perfectly fine. Don’t give up hope, as there are so many different types of treatments out there. All of our bodies react to things differently. You will find something that works for you—it's just a matter of time until you stumble across the right one.

But don’t just rely on medication to manage your symptoms. Go out there and experiment with other ways of adding some extra relief. You can try different types of movement and exercises, adding or taking away things from your diet, or trying out some new natural remedies.

Again, the first things you try might not have much effect, but keep going. People have found relief from so many different things out there. After a bit of trial and error, you find what works well for you and your body.

Don’t Google too much

The scariest thing that I did when I was newly diagnosed with ankylosing spondylitis was diving into a Google rabbit hole. I kept reading horror stories and worst-case scenario examples of people with AS. This all worked me up no end and sent my anxiety levels through the roof.

There is no point wasting energy on ‘what ifs’. If you happen to cross paths with any of those bad things along the way, deal with them then. Until then, you'd be better off spending your energy doing things to try to keep things under control. Chronic conditions, like most things in life, are always unpredictable. Take things one step at a time. Think about the here and now, not what you might have to deal with in the future.

You wouldn’t get in your car panicking about the possibility of getting in a crash. You just start the engine and do your best to ensure your journey is as safe and smooth as possible. If there are problems on the road, you either take another route or use what you have learned along the road to deal with them.

What things do you wish that you were told when you were newly diagnosed with ankylosing spondylitis? Let me know in the comment section below.