Look, I get it. You can’t blame people for being curious. It’s hard not to be when someone lives with an incurable — and mostly invisible — disease. I’m not hunched over, and I don’t typically have swollen red eyes, so to other people, I look “normal.”
In this column, I will explain what my illness is and the role it plays in my life. I also will answer some of the juicy questions that people have but never seem to ask.
What do you have again? Anky-what? What is that?
Ankylosing spondylitis (AS) is one of many rheumatic diseases that affect the spine and joints. AS attacks the pelvis, hips, sacroiliac joints, neck, eyes, feet, hands, intestine, and gut. AS is incurable and causes extreme fatigue, brain fog, and inflammatory back pain.
Of course, there’s a lot more to it. AS is systemic and often is accompanied by other diseases. The day-to-day experience is always changing.
What will happen to you? Are you going to die?
People with AS have a greater risk of mortality associated with vascular disease. But I probably won’t die because of AS. It may cause issues throughout the years, but the chances of me dying out of nowhere are not high. Thank god! (Also, knock on wood!)
My life will be hard. AS is degenerative, so I will face new challenges and obstacles. Lifestyle, medicine, stress, food, the environment, and other variables will affect my disease.
In short, sometimes things will be lovely. Other times, they will suck. Some days I think I’m fine, and other days I think, “I can’t live like this.” That’s the nature of chronic illness.
How does it affect your everyday life?
I usually wake up with intense pain. Sometimes it persists, and sometimes it goes away. I struggle to get moving because my spine desperately wants to fuse into one long rod. In other words, I become wildly stiff. With time, I can stretch, move, and give my body the space it needs. I usually work out in the water, which is low impact and gentle on my spine. Unlike other diseases, AS benefits from movement and activity.
I work as much as I can, usually a full day. I work from home, though, because of extreme fatigue. Most days, I experience brain fog and pain. Sometimes I’m OK.
I would say that most days, I live between 4 and 8 (out of 10) on the pain scale. I might seem fine, but in reality, I’m struggling. I’ve just learned not to talk about it.
I’ll admit, I can’t see your disease, so I’m having a hard time knowing what’s wrong. What can people do to support you?
You can just ask, “How are you feeling today?” Simply acknowledging it would be lovely. And it would be cool to pick restaurants and places to hang out that are accessible. Too much standing is bad, as are tight, cramped spaces.
Oh, and forget multivitamins. Believe me, we have tried them all.
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 Services, and are intended to spark discussion about issues pertaining to ankylosing spondylitis.
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