Ask the Advocates (Part 2): Explaining AS
Had you heard of AS before you were diagnosed and how did you educate yourself about it after receiving your diagnosis?
I had never heard of AS or anything other than just “arthritis” before I was diagnosed. After I was diagnosed, my rheumatologist gave me a pamphlet about AS, and I did a lot of Googling. I was also signed up for an information class about it in the coming months and got to go to the class where a nutritionist and a rheumatologist talked about AS and how our lives would be changing.
I also went to another class a few months later with a physiotherapist talking about how we can do daily exercise and feel better by doing so. I found communities on Instagram and quickly involved myself in them. I read a lot during that time to try to grasp what was going on, and how to deal with it on a long term basis. I think it’s so important to keep informed on what you have so that you know all the options you have to make life easier.
How do you explain to people that AS is not just back/joint pain?
For starters, I find it rare that anyone asks about my health. I don’t hide my AS from anyone. I wear my AS related t-shirts hoping someone will ask what ankylosing spondylitis is, but those are few and far between. When I am lucky enough for someone to inquire, I'm not quick to shoot down their statement of, “Yeah, my back hurts too." I listen to what they have to say and then I usually respond with something like “You know that feeling you get? I've felt that way nonstop for 26 years.” They can see I’m not that old, and they want to know more.
I explain that what I have is not from anything I did, it’s genetic, and it’s chronic. My immune system is attacking my vertebrae killing the tissue and replacing it with hard bone. Eventually, I will be permanently hunched over, and I show them by bending my hand. I then tell them that my shoulders, elbows, hips, and knees are also affected. AS is a full-body experience, and when their pain from lifting boxes is long gone, I will still be hurting.
I found that when it comes to diseases, it’s important to either have a visual for people. Or, find something that a person can relate it to, to make it personal. Just so they have a better understanding.
I often describe it as arthritis and that it’s an autoimmune disease. And like most autoimmune diseases, it is not centralized to its main target of inflammation. That it often will erupt in other linked parts of the body. With AS being centralized in the spine, it seems that it affects other pieces of the body that are in some way attached to the spine and/or the central nervous system, for example, the eyes. For patients living with an autoimmune disease already, like inflammatory bowel disease, I’ll say that AS has it’s own version of extraintestinal manifestations (EIM), although some are similar to that of IBD patients.
But I like to start by explaining that it is a back/joint pain issue because that is something that people can relate to. From there I will expound on the other aspects. I believe it’s important to educate people. However, if you don’t meet them where you are and help them climb up the ladder of education, you are just spewing information at them. You aren’t educating or helping. Just creating more confusion and chaos.
How do you explain AS to people?
Do you use the word disability to describe your AS?