It's Not That Easy!
Let's not hold back here, Ankylosing Spondylitis sucks! We wake up in pain, live in pain, and attempt to sleep in pain. And if it isn't pain, it is exhaustion, brain fog, eye swelling, trouble breathing, or one of the many other symptoms of AS.
When people see the reality
Many of us are great actors and do an amazing job of hiding how we are really feeling, but there are also times we just can't put on the costume of a healthy person and we let our true selves shine through. People see we hurt, and that is when they make a choice. To sympathize, to empathize, to ignore, or to try to help. For the purpose of this article, I will choose to write about the latter. Those who see our pain, and want to help.
Everyone has an answer
Very few AS patients will turn down help. Whether it be help in the kitchen, help cleaning, going grocery shopping, or just lending an ear to hear about our struggles. This is the good kind of help. However, this is not what I'm writing about here. There is a bad form of help. The advice received from those who want to fix us.
And it never seems to be right
Those who want to fix us usually show up about the time a chronically ill person opens up about their pain. We might say something at work or post something online. Usually, we are hoping for nothing more than a simple “Hey, sorry you’re having a rough time with your health, I hope you find relief soon.” Comments like this are nice. (By the way, never say “Get well/better soon” to a chronically ill person. Most of us are never “getting better.”) But, more often than not, it seems, the fixer will need to chime in.
“I know a guy who was sick like you, they just ate Kale every morning for breakfast, and they haven't taken a pill in years.”
“Have you tried CBD oil? If you’re interested, I have a link to my online store.”
Unsolicited advice is hurtful
Comments and solicitations like this are not only annoying, but they are hurtful. What they imply is that we are doing something wrong and our illness is our fault. If you have never had someone tell you to your face or online that your illness is your fault, consider yourself fortunate because it happens more often than you could imagine. And it really hurts.
For the record, I was diagnosed with Ankylosing Spondylitis at the age of 12. I don’t think up until that point I’d even eaten McDonalds. I ate very very healthy, and I still got sick. So, implying diet was the reason is a big crock of rotting Kale!
Ankylosing Spondylitis is a genetic autoimmune/autoinflammatory condition. Our immune systems are in hyper-overdrive and after they kill off all the viruses they want, they choose to go after the tissue and cartilage between our joints. Are you telling me eating a cheeseburger caused this? Are you equally telling us a plant would have caused our immune systems to not go all Bruce Lee with a machine gun? Sounds a little ridiculous, doesn't it?
If I got all 2.7 million Spondylitis patients in one massive room and asked for a show of hands, how many people would like to take more meds? I hopefully wouldn't see any hands. Trust me when I say, we don’t enjoy the amount of medication we take. But, telling us, without scientific proof, that all our problems (including the damage that has already been done) can be cleared up by eating a plant, does a lot more harm than good.
Do you use the word disability to describe your AS?