I Wish Ankylosing Spondylitis Came With an Instruction Manual

Don’t stand too close, because I’m a sniffling, coughing, bathrobe-wrapped lump of a human this week. It’s nothing too serious, just a run-of-the-mill sore throat and cold that’s making me speak like I have a clothes peg on my nose. Being sick is never fun, but I’ve noticed that this kind of illness doesn’t play with my mind the same way that ankylosing spondylitis (AS) does. 

I can almost relax when I’m sick with something I’m familiar with, like a cough or a cold. This is because it’s easy to recognize the symptoms, and I know exactly what to do about it. For me, this kind of sickness is uncomfortable and tiring, but at least I know that I’m probably going to feel better within the week. Better yet, I know which medication I can take if I want to reduce my symptoms.

With ankylosing spondylitis, it’s the opposite. Trying to figure out this autoimmune disease has been like a ridiculously complicated puzzle, after starting with zero knowledge about it. The symptoms are confusing, medical assistance is sporadic (and sometimes downright wrong), and the medications seem to come with a host of possible side effects that need to be evaluated.

If only there were an instruction manual for diseases like ankylosing spondylitis. To get a grip on this disease, I feel like I need to become a health detective.

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For example, exercise and mobility are important for people with AS, but it’s not easy to find genuinely helpful exercises. At the gym a few months ago, a personal trainer started giving me advice on adding new exercises to my basic body-weight routine. “Clamshells would really help your hips and glutes,” he suggested with a smile. 

At that point, instead of simply accepting the advice of an expert in personal training, I had to refer to my personal experience. Luckily, I’ve kept a list of all the exercises that cause me pain. I could confidently say “no thanks” because I know that clamshell exercises actually cause me a lot of extra hip pain the following day. If I hadn’t spent time and effort testing and recording exercises and stretches that suit my own AS symptoms and body, I’d be incredibly confused as to why I was suddenly in extra pain after blindly following expert advice. 

My husband, Dave, who is also diagnosed with AS, had a similar experience. His physiotherapist gave him a list of six simple stretches that were supposed to reduce his sacroiliac joint pain. Instead, they had the opposite effect. “But now I’m actually in more pain, Jemma!” he exclaimed after a week of following the new routine. “What should I do? Do I listen to the physio and keep doing these stretches even though it hurts? Should I do nothing?” he wondered, brow furrowed in confusion and pain. 

Keeping a record

Since we aren’t handed an instruction manual (wouldn’t that be great?), I’m creating my own personal one. I’ve spent time recording my individual symptoms as well as my reactions to a variety of exercises and medications. Ankylosing spondylitis has a well-documented list of symptoms and a system for diagnosis, but living with this disease is an incredibly personalized experience. 

Keeping a record of your journey with AS is empowering, whether it’s a document folder, journal, or even digital notes. “You should be the head of your healthcare team,” writes Ben Hofmeister, a former Green Beret who was diagnosed with multiple sclerosis and is a columnist at our sister site, Multiple Sclerosis News Today. In a blog post titled “Skin in the Game,” Ben explains that “no one should be more involved with, or care more about, my well-being than me.” 

Although I’m no expert on rheumatology or physical therapy, I’m the world’s leading expert on myself. As much as I value the advice of experts and specialists, I view that advice through the lens of my own personal situation. By creating my own instruction manual, I can get better control over my disease as I figure out my personal puzzle of symptoms, medications, and lifestyle factors.

For now, though, at least I know I can rely on a handful of throat lozenges as I get over this pesky cold. Pass me the box of tissues, please. 

(Author’s note: My intent in this column isn’t to downplay the potential seriousness of a cough or cold. I know that viruses can have life-threatening consequences for some, including those with weakened immune systems. These are simply my personal thoughts about my own illness.)  

Note: Ankylosing Spondylitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Ankylosing Spondylitis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ankylosing spondylitis.