My Spondylitis Life Part 0
What Is This?
Not many people have heard of ankylosing spondylitis. 1 Fewer still know what it is like to live with.
So I’m going to write about what it is, not medically, but what it is to me. What role it plays in my life; how it impacts me daily and in the big picture. How it makes my life worse, and yes, how it makes my life better.
I’m not quite sure what structure this will take. I have a lot of words inside my head and only a fraction I’ve ever told my journal or my lovely and supportive wife. But it’s a journey we can go on together.
I have 5 posts, one for each Thursday in June. I’ll try to keep them all short and relatively easy reading. If there’s still more to say, maybe I’ll keep going.
Others have written similar things, almost certainly better than I can. But if me writing this can help just one person, it’s worth the redundancy.
Why Am I Writing It?
Recently, my mom told me that she had read 2 different books about spondylitis and how to manage it. She did this because she wanted to better understand what it was like and to understand how she could best support me. First, yes, she’s an awesome mom.
But I was also struck by how hard conversations like this are to have with people, even those we care about. In addition to my own spondylitis journey, I have had many friends with a variety of health issues. I’ve written before about how I am concerned that being polite can reduce our compassion for each other. I’m always torn between wanting to ask questions 2 and being respectful of their own private matters. I suspect others feel similarly.
So I want to open up and be vulnerable. Sure, hopefully some people who read this are friends who will be supportive of me. But mainly I want to help set the precedent that we can talk about these things. That we can all make each others’ lives just a little bit easier.
What Is Ankylosing Spondylitis Anyways?
This will be quick, and roughly correct. I am no doctor, and I’m more concerned with explaining how it feels than with parroting a medical textbook (or wikipedia). Please skip this if you’re already acquainted, as you probably know more than me. 😂
“Ankylosing spondylitis” translates roughly to “fusing inflammed spine”, which is an accurate enough summarization, though it glosses over some of the details.
It is chronic condition in which the immune system begins attacking the body. The inflammation actually affects the whole body, although it is focused on the hips and spine. Other joints are frequently impacted, as are the eyes and the gut. Any region affected by the inflammation will be painful, to the point of limiting movement and preventing sleep. Over the long term, the chronic inflammation begins to cause fatigue, brain fog, and a host of other symptoms.
If left untreated long enough, the soft tissues of the spine begin to calcify and fuse. Generally starting from the hips (sacroiliac joint) and working up. The endgame is called “bamboo spine” and is a fully fused (and curved forward) spine, utterly lacking in mobility.
And so We Begin
I’ll be honest. I was scared to start this project. I still am.
I asked my wife. She told me it was a good idea.
Some of my most trusted friends were also interested.
So here I am, doing the thing.
But it wouldn’t be happening without you, my friends. And it wouldn’t be as meaningful without anyone reading. So please, ask me any questions you may have. I’ll answer them all. If I get enough questions, maybe I’ll do a Q&A post at the end.
Feel free to ask in the real world if you know me. Otherwise get in touch here: email@example.com.
Also let me know if you have your own story you want to tell (privately or publicly). I love to hear others’ journeys and know that we’re there for each other.
Keep Reading Part One, in which I give the context of my history with spondylitis so that the more interesting parts make a bit more sense.
Get future posts as an email: