I know most people are trying to be nice when they give their advice or make comments on your AS. But even the most well-intentioned comments can be frustrating or downright hurtful. I took an informal poll amongst my friends who have AS, and here are the top results of what not to say to people with AS.
“What do you mean you can’t do it? I saw you do it yesterday!”
It can be hard for some people to understand that just because we can do something one day, it doesn’t mean that we can do it again the next. There are days I have a hard time getting out of bed, and all I did the day before was walk around the neighborhood. Conversely, there are days after doing a lot of yard work that I’m fine the next day. It’s equally as frustrating for us.
“You’re being dramatic. Everyone has back pain.”
While this is true, AS pain is different. For me, my back pain is more than just muscle pain. It’s muscle spasms, shooting nerve pain, and vertebrae that are fusing. When my AS is really active, I get a nerve pain just above my left kidney. I have made several trips to the ER thinking it was a kidney stone. Nope, just the joys of living with AS.
“You shouldn’t be taking those meds.”
I know people get concerned when they see what medications you are taking. AS patients can take some powerful medications to control the symptoms of AS. What they don’t understand is most doctors don’t start out with the “strong stuff.” It’s a process to find the right combination of medications to help control your symptoms. I know I have done a lot research on the medications I have been prescribed.
“I get tired, too.”
I get it. We all get tired. It’s hard to explain, but when fatigue hits, it’s just different. The closest thing I can compare it to is the fatigue you feel when you have the flu. There are days where just walking across the room is a big deal. When I hear people say this, it sounds to me like they are calling me lazy.
“But you don’t look sick.”
This was one that came up the most often in my informal poll. I think most people say this with good intentions. This rubs most AS’ers the wrong way is because it sounds like you are calling them a liar. I hear this when I use my handicap placard when I park. Some people don’t have to use words to express this. Their judging looks alone are enough to cause me anxiety.
I received way more responses than just these. It’s OK to ask questions about our disease. It’s the only way to learn what we are going through. Just remember that just because you don’t understand something, it doesn’t mean that it’s wrong.
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