I Wish Ankylosing Spondylitis Came With an Instruction Manual
Living with ankylosing spondylitis means figuring out a lot on your own
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.
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.
Great suggestion to keep our very own personal record/diary/journal - that is SUCH a good idea, thanks! I love how you tell us about your own journey, making for an interesting read –– and at the same time you give us tips and suggestions to try ourselves. And a question: based on your own personal experience and your husband's, do you think there is a specific moment or incident that made you get tested for AS? Just wondering, in case there is something other members of my wider family could potentially be looking out for.
Hi Jean, that's very thoughtful of you to be on the lookout for your family, especially as AS seems to be hereditary. In all honesty, I don't think there's an exact symptom or event that I could pinpoint as being "the" thing to look out for, people seem to experience AS quite differently. For example I started getting spine pain after childbirth, but Dave's symptoms progressed slowly over a decade or more. I think just sharing the fact that a chronic disease runs in your family, and encouraging your family to be aware of the list of symptoms is probably the best thing you can do. Plus knowing there's a blood test for the HLA-B27 gene which can be a strong indicator for ankylosing spondylitis (though you can still have AS without testing positive). Confusing, isn't it! I wish I could give you a lovely concise answer but unfortunately it's not that simple.
This article is so true! I have had AS for over 40 years now and it's sad to say that I feel so much better when I have a virus because I'm not in pain. My body and mind can only concentrate on one problem at a time and as you said I know what to take for the symptoms of a virus to alleviate them. I've had one for the last 3 weeks and now that I'm almost fully recovered my AS pain has arrived once again.
Hi Robin, gosh having AS for 40 years, you have a lot of experience with this disease! Isn't it frustrating that it's almost better to have another problem to distract you from the pain of AS. I'm glad to hear you're almost recovered from the virus, I hope you've got some ways to get relief from AS pain as well.