Spondylitis Communication 103: Clarity
Have you ever fallen asleep watching one movie and woke up to another? One minute Harrison Ford is Indiana Jones, then you pull that soft blanket up under your chin knowing eschewing that small throw for full sized was the right choice, what feels like a moment passes, and then Viola Davis is talking about being smart and important. You are smart and important, but that won't stop you getting confused by a jump like that. And maybe part of you wants to see Viola Davis as Indiana Jones, just a little bit? Think it over and let me know.
The never-ending positivity
Fantasy: “I've got X, but X doesn't have me.”
Reality: Any medical condition changes your life.
Fantasy: “The only disability is a bad attitude.”
Reality: Physical differences shape how we are perceived by others. Society's decision to include or exclude certain bodies has profound consequences, no matter what attitude you have.
Fantasy: “I don't let my illness bother me.”
Reality: It's possible that you have adequate medical care and resources, but could be bothered under different circumstances.
Mixed: “I am not my AS.”
These axioms come off as empowering, pugnacious (think Winston Churchill), and strong. But they're a head fake, confusing the issue by skipping over life-changing personal consequences of physical differences. Deflecting attention away from limitations and pain makes the world feel tidier, but it's not. I know that I'm not my AS, but we are a packaged deal. Clarity in communication is something that we grow into as patients rather than a milestone. Being mindful of your boundaries and time, honest, and specific will get you closer to clear.
Trust your gut about unproductive conversations
Every social interaction involves exchanging values and world views. Ideology, personal experiences, and things we want to be true shape perceptions of concepts like health, illness, ability, and character. Some people aren't open to understanding your experiences. This does not reflect your worthiness. It's possible that interacting with them on their terms is bad for you.
Be specific, within your own boundaries
AS symptoms and treatments change how bodies function, sometimes with little to no warning. Canceling or changing plans isn't being flaky or deceptive. Sometimes it's helpful to mention symptoms. Here are a few examples.
“I want to go out, but AS used the veto.”
“I know we planned to go for a hike, but my feet are 100% sharks and fire. Maybe we could do something else instead?”
“I can't make it today. Could we try again next week?”
Mentioning AS can help develop more AS-friendly plans.
“I can't do bikes. That's right in the Spondylitis zone.”
“I gotta be honest. Riding a horse is like a mule kick to the crotch.”
“Camping and AS don't go together. Is there a hotel nearby?”
Other than back pain and fatigue, what is the most common symptom that AS patients experience?