Are you having one of those days?
I feel your pain. No, really, I do. I just resurfaced after an awful, no-good, very bad flare.
I bet your joints are groaning, popping, grinding, or silently throbbing. I bet you’re tired — there’s no word for the kind of fatigue AS can cause.
Oh, and before I get too far, does HLA-B27 ring a bell?
I thought it might.
What about uveitis, iritis, sacroiliitis, enthesitis, costochondritis? Oh, and how could I forget kyphosis?
Now we’re speaking the same language! You and I could probably carry on for hours. This is one of the reasons why I hope you’ve found a group of people you can talk to about living with AS — in person, online, or even by mail. And if you’re like me, your support communities will feel like family.
And our family is growing. Maybe you’ve had ankylosing spondylitis for two months. Maybe you’ve had it 50 years. But one thing is sure: You are not alone in your experience. And even though it can feel like AS is rare, the good news is that as awareness grows, it’s getting easier to find other people who have the disease.
AS is a constant battle, but we are some of the strongest people on the planet. A majority of humans wouldn’t survive a day in our skin — for goodness’ sake, we are functioning with daily levels of pain in the same arenas as childbirth, fibromyalgia, and nonterminal cancer. Go on, claim the title — you’re superhuman simply for surviving.
There is no cure for AS. But — there is a but — treatment options continue to improve and expand, and they look much different than they did even 25 years ago. We have specialized prescription treatment options like biologics. We now know it’s helpful to exercise or practice yoga. Many people use diet, acupuncture, or massage to help manage symptoms. Others also use medical cannabis. I personally like a mixture of some of these treatments, and I encourage you to work with your doctors to find what works best for you.
Last but not least, I want to stress the importance of listening to your body. Pay attention to the things that trigger you. Be kind to your body, but don’t beat yourself up if you backslide (your body will take care of that for you).
I do have one final request — once you’re ready, take a new AS patient under your wing and help them learn what others have taught you.
And, as I bid you adieu, keep your head up, if you can, and keep fighting back.
Charis is a writer and ankylosing spondylitis advocate in Sacramento, California. She lives with ankylosing spondylitis, major depressive disorder, post-traumatic stress disorder, and two furry Maine coon mixed cats. She blogs at BeingCharis.