Caution: Rant ahead.
If I could collect a dollar for every time I heard the statement, “Yeah, my back hurts too” I’d have enough money to fund the entire HHS and CDC!
Ok, that made me laugh. But the point is that this is what we, as people with Ankylosing Spondylitis, hear. If you think about it that is a really intolerant, insensitive, and completely unkind thing to say to someone whose spine is slowly fusing together.
Imagine… not being able to touch your toes. You aren’t out of shape or lazy or don’t do enough yoga – come on! Imagine… you can’t go skiing anymore because a fall could not only hurt you, like it would anyone, but it could kill you. Imagine… owning multiple heating pads – there is a reason they are blue – blue for spondylitis! More on this with a wonderful guest apple I’ll be posting on Sunday. We aren’t dying, our disease is not terminal. We are just living a very difficult existence. Please be more tolerant and kind if you hear someone is dealing with AS or chronic pain.
I don’t want to rant but I’m passionate about trying to help people understand that there is a difference between my lovely husband waking up and saying he’s sore or his back hurts, and the pain I deal with. And – I’m doing so much better – I’m one of the lucky ones who can get access to the crazy expensive drugs that give me the strength and ability to have a basically normal life. Imagine… being one of my friends like Shashwata Satya from Bangladesh who is a brilliant young scholar who has had multiple surgeries and had a taste of life with Remicade but now can’t afford to continue to get it. He said “I could fly when I was on Remicade” and now he’s firmly attached to the ground and he’s suffering. Imagine… being my friend Ron who is charming and giving and a wonderful new friend I’ve met through ASAP who is in so much pain and he can’t get anything from the Canadian health care system (something I hear repeatedly) and that he’s distraught. Imagine… my dear friends – a life with AS.
Day 141 was created in ink and acrylics.